Wednesday, 13 April 2011

Tips for Treating Pots

It is a real fight to get better so listed below are some of the key things that I think can help.

Medications:

Atenalol

I take paediatric Atenalol oral solution 5ml of which I take 1 ml three times a day. The key problem with POTs patients is that we do not tolerate medications very well. Whilst in hospital I was given a higher dose (an adult dose) which slowed my heart rate down too much which was dangerous. It was my suggestion to try the paediatric dose. I had to push for this whilst in hospital so be forceful when you speak to your doctor. Sometimes I can lower the dose. I have my own heart monitor and if I feel that my heart rate is going too high I sometimes just take an extra dose at the time to relive the symptoms. Everyone is different so because this oral solution is a very low dose you can play around with it to find out exactly what suits you.

Seroxat

I take 10mg of Seroxat tablets, one per day. Seroxat is an antidepressant. My cardiologist told me it is sometimes used in the tilt table tests to raise blood pressure. In my case it helped to raise my blood pressure. The dose I take is a very low dose as I could not tolerate even 20mg. I think it also helped to ease the nervous state that I was in whilst I was very sick. As it is a very low dose it does not really work as an antidepressant and it is fine to stay on this dose long term. However I have now descovered that to stop taking seroxat this must be done slowly.

Alternative Medicine:

As soon as my blood pressure was high enough for me to go and see my osteopath I did so. I had seen him for many years to help with my Marfans syndrome. When he started to treat my Pots I saw him twice a week for about two months. There is a tiny bone in the neck at the front next to the main artery. He very gently worked on this bone as it helped to stabilise my blood pressure. His details are in my blog. I really do believe that this was one of the main things that started me onto the road to recovery. I now see him at six week intervals but he no longer needs to work on my neck. I really do think that it would be worth looking into this type of treatment if anyone has POTS but you must make sure you see a highly qualified osteopath like Stephen Sandler, who is renowned in his profession.

Mirena coil:

I had this fitted in April 2010. One thing that I noticed was that my symptoms were always worse during menstruation. I had a test to check my hormone levels and this showed I was entering into my menopause. The coil has helped so much. I have my own theory that POTs can be caused by hormones. Women that suffer from POTs seem to be teenagers, pregnant women or women who have recently had children or in their mid-forties. This is just my theory and I cannot explain why men and boys also get POTs but perhaps hormones play a big part for them too.

Stress:

I think stress played a huge part in me becoming I'll. It was almost like a good old fashioned nervous breakdown. I now believe that I have always had POTs. As a young child I used to faint if I had to stand in the school play or as a teenager I used to faint if I had to stand in the pub but because I was so active and exercised all the time I think that my symptoms were kept at bay. I am sure that stress caused my body to almost give up in May 08. My Father had passed away and my Mother was taken into hospital with a heart block. I was manic at work and had a family and home to look after. I think finally all the stress got to me. After being in and out of hospital for a year and in a wheelchair my GP suggested that I see a Psychiatrist in 2009. He prescribed the Seroxat and said that he was sure it would help me to get better as it also raises blood pressure. He also recommended that I have some therapy to help me deal with the Pots. The seroxat really did help as did the treatment with a therapist which included EMDR (rapid eye movement therapy, usually used for trauma patients). My therapist also recommended that I try Mindfulness treatment.

Exercise:

Exercise is the main key to getting better. I know it sounds silly when you can't even get out of bed but it is so important to build up the legs to help pump the blood round the body and stop it from pooling. Whilst I was in hospital I started to raise my legs and pedal in the air as if I were riding a bike. I could hardly do this at first but you have to keep trying as it is the key to getting better. When I came out of hospital I got a recling exercise bike and gradually built up every day. I also got a wheelchair. Getting house bound is the worst things that can happen. You get scared to go out in the end. At least if you have the wheelchair you can go to the shops (standing in line was impossible, and still is a problem for me even now) or be taken for a walk and get out now and then and try to walk yourself. With the wheelchair my mother took me out every day and I would try and walk pushing the chair. When I got too tired I would get in the chair and she would push me again. I would gradually build up every day. I make sure I walk for half an hour every day now and I speed walk (so there is hope I promise). I also swim. You must build up your leg muscles to help pump the blood round the body and stop blood pooling. I also used to put on music and dance around to build up my stamina. It nearly killed me at first but you have to be strong and don’t give up. Even now, first thing in the morning, my heart races. I take my medications and keep moving around. I climb the stairs a few times to get the circulation going and make sure I keep moving around. It is sometimes hard not to go back to bed but I make sure I avoid this at all costs.

Low GI Index Foods:

I have mentioned these in my blog. I stick as much as I can to this diet and I eat little and often. I can eat big meals now but my heart does race when I do this. Avoid garlic at all costs as this lowers the blood pressure.

High salt intake:

I eat boiled eggs now in the morning as I can add a lot of salt. I eat soup at lunch time and add salt. Then add lots of salt to my evening meal. I could not take sodium tablet as I could not swallow them. I do not measure what salt I take but I just add plenty to my food. I think sometimes it makes things worse to over analyse what we are doing as this adds to the stress and makes the Pots worse.

Drinking lots of fluids:

As well as drinking water I drink organic tea. I did stop caffeine when I first became ill but I have found tea does not make me urinate so much. I therefore retain the salt I need to increase the blood volume. This may work for you. I found coffee gave me an irregular heartbeat. Caffeine does raise the blood pressure so experiment.

Blood pressure machine:

I do not use this very much now. However, when I was really sick I found it was helpful to take my blood pressure. This would stop the panic attacks because I could see exactly what my blood pressure was. It stopped my imagination running wild.

Smoking:

Now this is controversial. I do not recommend this to anyone. I have smoked since I was 15. I mentioned earlier that I believe that I have had Pots since childhood and maybe because I smoked at such an early age this helped to keep my Pots symptoms at bay. I was forced to stop smoking as I was in hospital for my POTs in May 08 and started again in April 09 when my husband left me. As soon as I started to smoke my symptoms improved. My cardiologist is aware of this. He said that smoking does raise the blood pressure. I know all of the reasons why I should quit but it got me out of the wheelchair so it, for me, is a case of quality of life. I am going to try and quit again but must admit am scared to. Watch this space.

Change in life style:

My husband left because he could not cope with the POTs in April 09. I know realise he was a cause of much stress to me and maybe living with him made my symptoms worse. Another big cause of stress to me was work. I was pensioned off for ill health in July 09 as I could no longer work. I was very lucky that my company kept my job open all the time I was in hospital and I worked from home when I was able to but finally it was agreed that it was going to be impossible for me to return. I am very fortunate that I worked for 26 years so I have a pension to fall back on. I do not know what would have happened to me if I did not have this.

Get Your Kidneys Checked:

A doctor mentioned to me that there is a theory that damage to the kidneys by antibiotics in childhood could be a cause of POTs. My kidneys are slightly damaged and I only recently found this out.

Raise Your Bed Under Your Head:

My Professor told me to do this with either bricks or pillows which I did. It helps to stop your heart racing at night. I used to sometimes wake up at night trying to catch my breath. It was awful, like I had stopped breathing or had died. This did help. Also taking the Seroxat really did help as my panic attacks started to stop. I used to have very vivid dreams and I think I used to panic in my sleep.


Living with Pots is not easy. In the most part I live a normal life now. I still sometimes have bad days but I find that I just must not give into my symptoms. It is all trial and error but never give up hope. You can get better. Please read through my blog and I really do hope that you find the information in it of use to you. I mostly wrote this when I was very sick and I pray that all my hard work and efforts at the time of being so sick will help others. Pots is an awful condition but you can beat it. Good luck.
Lynne

36 comments:

Erika said...

While I'm sorry that you've had so many trials on your road to recovery, I want you to know that your recovery has given me hope that I, too, will get this condition under control.

MJ said...
This comment has been removed by the author.
MJ said...

I've had POTS since 1980 and although it's been rough it has also been a sobering experience. You tend to learn allot about yourself as a person and as a patient with POTS. I also believe that way to better health with POTS is exercise. I do everything I need to do to take care of a household and my daughter. Has it been rough--YES. Do I still get sick--YES,but you learn to get through life and POTS in a better way. I am a believer that attitude and outlook charges everything. You should be proud of your accomplishments with POTS. Others can look up to you. I have a blog as well and I hope you will check it out and become a member. Take care--MJ (sorry had an error)
http://p-o-t-s
andplans.blogspot.com/

Lynne Campbell said...

Thanks so much MJ. That is so lovely of you to say. I will defo have a look and become a member. Kind regards Lynne

Stressed out Saint said...

Hi,

My daugther has just been diagnosed with POTs and is also under investigation for Marfans, Epstien Barr virus and possible chronic infection, (lyme)?

Thanks for your very informative blog and the Drs details. We are seeing Dr Goyal in London and he is referring us to I hope some of these docs... xx

Keep well, Sarah xx

Anonymous said...

How long do you think a typical recovery time is for someone with POTS?

Lynne said...

Hi Sarah. Sorry I did not reply before. It's been the busiest year for me which is great because I'm fit and healthy still:). How is your daughter. I really hope you got some answers and she is on the mend now.

Sonja. I would say it depends. If you really have become decommissioned like I was then it takes a lot longer to get better. For me it's been 4 years and yes I do still get tachycardia from time to time but because I'm so much better I just take an extra dose of the atenolol and it usually goes away. You never get better from pots I think. In fact I'm sure now I have had it all my life but it's a case of managing it. If hat makes sense. Getting all the tests done so you can learn to manage your symptoms. For example. One test showed that I get tachy after meals. So I eat little and often and low GI even now. If I am out I do my shopping first so that if I have to stand in line I don't get tachy then eat after shopping. If I did it the other way round I would just feel faint in the que :). Hope this helps

Lori Rendina said...

I just discovered a temporary "cure" for my POTS symptoms: When I start to feel dizzy/nauseous and my heart is pounding really hard, I have a friend drive me around in the car. I know it sounds stupid, but laying down in the back seat of a moving car for about 1/2 hour will make me feel a lot better. I think the motion of the vehicle restores my circulation and gets me over the episode a lot faster. (I always bring a plastic bag to barf in, just in case, but I haven't had to use it yet). I discovered this while on the way to the ER a couple of times -- by the time I got to the hospital, I was feeling better again. Also, I'm learning that carbs are the enemy, so I've had to adjust my diet accordingly. I I spent $15,000 out-of-pocket last year before they finally diagnosed me with this thing. It's been a nightmare.

cjle said...

My first visit your site.great artical.good exercise information my side.http://cool-health-guidelines.blogspot.com/2013/07/beginners-guide-to-exercise.html

tachycardiagirl said...

How can you exercise when trying to stand up just to get a glass of water my heart rate goes anywhere from 140-187????

Lynne said...

I know it sounds the most ridiculous thing in the world to exercise. I was totally bed ridden. I know exactly what you are saying as I was the same. It's took me about a year so it's not an over night fix and you have to be determined and patient and not give up. I started as I've mentioned in the blog. In my bed. Lying down. Doing exercises with my legs in the air like riding a bike. I could only do a minute at a time. My heart felt like it was about to jump out of my throat. I would do one minute every hour then gradually gradually build up. I was in a wheel chair. My Mum would take me for a walk and I would get out and walk for a little while until I had had enough. I gradually gradually built up. Then I got the recumbent bike and did the same. The absolute key is to build your legs up. Once I was fit enough I started to dance around for a few minutes to music to build up my stamina. Then moved onto swimming when I got stronger. As I said it too a year. Maybe even a bit more than a year. Our body's become decommissioned and we have to build them up slowly again. Did you know astranaughts suffer with pots when they come come. Because they have become decommissioned. They have pots like symptoms and have to go through a process to build their bodies back again. The key problem with pits is the blood pools in the legs. That's why we need to build the legs up to be able to pump the blood round the body. I promise you it works. I'm living proof. I live a normal life now. Well almost normal. I do still have pots. I get tachycardia in the morning after being in bed overnight. I run up and down the stairs a few times to get the blood pumping. Take my melds and it usually goes away. My hr can still go up to 150. The key thing is I've learned to live with it now. I don't panic any more. I see it that bed is the enemy. Or resting. If I lay around all day I get symptoms. So I stay active. I still get dreadfully tired but I ignore that too. So it is a real battle. It's exhausting but you can win it. I'm just glad I'm out of my wheelchair and able to stand up and hold my new grandchild without dropping him. There is life after pots I promise. Well it's not after because it doesn't completely go but you can get your life back if you try what I've suggested and don't give up. Just very very slowly. Good luck :). If I can help any more just let me know x

Lisa said...

Lynne
I was diagnosed with Pots Oct 18.…2016..
Im 48.. IM beginning to wonder if Ive had it for years...as I was diagnosed with panic disorder..allergies.. Gerd.. Etc..symptoms came and went for years. But this time was much worse ..this time my tachycardia is much worse.shortness of breath..dont eat much.. Stuffy nose itchy eyes and skin and some coughing... Also my BP can be a little high or a little low depending on the day and level of activity.. Did you experience shortness of breath.. Like you cant get a good quality breath half the time? I also go to the store using the wheel chair and I don't exercise much but I get up and do household chores periodically ..in between resting.. And I drive my daughter to work everyday. It's been about a month.. Im not on any meds except flonase and zantac as needed ..but Im new to all this and so is my doc so I don't know who to see... Cardiologist? Neurologist! Internist?
Anyway..thanks for having this blog😊

Lisa said...

Lynne
I was diagnosed with Pots Oct 18.…2016..
Im 48.. IM beginning to wonder if Ive had it for years...as I was diagnosed with panic disorder..allergies.. Gerd.. Etc..symptoms came and went for years. But this time was much worse ..this time my tachycardia is much worse.shortness of breath..dont eat much.. Stuffy nose itchy eyes and skin and some coughing... Also my BP can be a little high or a little low depending on the day and level of activity.. Did you experience shortness of breath.. Like you cant get a good quality breath half the time? I also go to the store using the wheel chair and I don't exercise much but I get up and do household chores periodically ..in between resting.. And I drive my daughter to work everyday. It's been about a month.. Im not on any meds except flonase and zantac as needed ..but Im new to all this and so is my doc so I don't know who to see... Cardiologist? Neurologist! Internist?
Anyway..thanks for having this blog😊

Unknown said...

Thank you

Lynne said...

Hi Lisa. First thing to say. I noticed your age. I really do think hormones play a huge part. One of the blood tests they did back in 08 showed I was perimenapausal. So the gynie dr the Pots expert had sent me to see suggested that I have the Mireya coil fitted. I really did see a drastic improvement afterwards and I've had another one fitted since. It's 3.5 years old now and they last 5. I have been really good but noticed as both this coil and the last one got old my tachycardia gets worse. So I'm thinking maybe you are in an early change. A lot of young girls get Pots during puberty and it makes sense to me that it's hormones. That play a big part. Remembering back to my teenage years I used to faint all the time, especially around the time of the month so I think I have had it since then but I never bothered to tell my doctor about the fainting. He gave me the pill though for heavy periods. Anyway. From my experience if I were you I'd get my hormones checked. I am 51 now and in 08 was 44. Then I'd see a cardiologist. He can do the tilt table test to see if it's really Pots and what type of Pots. I have no idea what type I have as back then it was bad enough trying to find out I just had Pots lol l. So little was known. It's really important to get the tachycardia under control so the cardiologist will do that. The paediatric atenalol 5ml solution is fantastic as it's a tiny dose. I think it may be banned though in the States if you are there. Plus the seroxat which I am down to 5mg daily and never took more than 10mg. So address needs and your hormones 1st but try and do the exercises I've said in my blog. Really slowly to start but if you get weaker and weaker you will just get worse. Did you know astranaughts get Pots. That's why they have to get medical care on the return home. To build up the leg muscles again. Yes I did get really short of breath. I used to sometimes wake up in the night in shock because I had no breath at all. It was so scary. I think it's because we are in a state of panic all the time. Look up yin yoga too. That will help you to relax and it's a lot of floor exercises. You should be able to get a cd if there are no classes you can go to. So the first port of call for doctors I'd say are gynie and cardiologist. The cardiologist can refer you on if he thinks you need tests from other specialists. Don't give up though. I lead a near normal life so there's hope and you can get back to normal with time xxx

Lynne said...

Hi Lisa. First thing to say. I noticed your age. I really do think hormones play a huge part. One of the blood tests they did back in 08 showed I was perimenapausal. So the gynie dr the Pots expert had sent me to see suggested that I have the Mireya coil fitted. I really did see a drastic improvement afterwards and I've had another one fitted since. It's 3.5 years old now and they last 5. I have been really good but noticed as both this coil and the last one got old my tachycardia gets worse. So I'm thinking maybe you are in an early change. A lot of young girls get Pots during puberty and it makes sense to me that it's hormones. That play a big part. Remembering back to my teenage years I used to faint all the time, especially around the time of the month so I think I have had it since then but I never bothered to tell my doctor about the fainting. He gave me the pill though for heavy periods. Anyway. From my experience if I were you I'd get my hormones checked. I am 51 now and in 08 was 44. Then I'd see a cardiologist. He can do the tilt table test to see if it's really Pots and what type of Pots. I have no idea what type I have as back then it was bad enough trying to find out I just had Pots lol l. So little was known. It's really important to get the tachycardia under control so the cardiologist will do that. The paediatric atenalol 5ml solution is fantastic as it's a tiny dose. I think it may be banned though in the States if you are there. Plus the seroxat which I am down to 5mg daily and never took more than 10mg. So address needs and your hormones 1st but try and do the exercises I've said in my blog. Really slowly to start but if you get weaker and weaker you will just get worse. Did you know astranaughts get Pots. That's why they have to get medical care on the return home. To build up the leg muscles again. Yes I did get really short of breath. I used to sometimes wake up in the night in shock because I had no breath at all. It was so scary. I think it's because we are in a state of panic all the time. Look up yin yoga too. That will help you to relax and it's a lot of floor exercises. You should be able to get a cd if there are no classes you can go to. So the first port of call for doctors I'd say are gynie and cardiologist. The cardiologist can refer you on if he thinks you need tests from other specialists. Don't give up though. I lead a near normal life so there's hope and you can get back to normal with time xxx

Lynne said...

Unknown. Your so welcome. Hope it helped

Lisa said...

I've been having a hard time doing exercises because my BP raises . and Im sure Im menopausal.. I had a hysterectomy a few yrs back. Im also finding I need to take allergy pills to breathe better. Im certainly not having any fun at all... I do hope things get better over time. I see a cardiologist on Dec 7 2016.. Will see what happens.. Thank you Lynne for having this blog💗

Lisa said...

I've been having a hard time doing exercises because my BP raises . and Im sure Im menopausal.. I had a hysterectomy a few yrs back. Im also finding I need to take allergy pills to breathe better. Im certainly not having any fun at all... I do hope things get better over time. I see a cardiologist on Dec 7 2016.. Will see what happens.. Thank you Lynne for having this blog💗

Lynne said...

Hi Lisa. I'm sooo sorry. Exercise is the hardest thing of all. But if you think about it it makes sense. The weaker you get the harder your heart has to work because you are so unfit. So I see it that bed and sitting down is the enemy. The worse thing we can do. But that's easier said than done when your heart is pumping so hard it nearly comes out of your throat. So do what I said in my blog. Start off really really slowly. If you can't manage anything. Just consentrate on building up all your leg muscles. You need these to be strong so the muscles can pump the blood round the body and stop it from pooling. Over the years I have had many relapses. Chronic tiredness and headaches and if I take to my bed for any length of time that's it. My tachycardia comes back dreadfully. The main thing is to get your heart looked at properly. I know for sure mine is structurally fine even though I have marfans syndrome. So knowing that I know that I can exercise and it's not going to hurt me. So what I'd suggest is until you see the cardiologist don't do anything too strenuous. Just in case it's something else. Just do the leg exercises lying down. With light weights or even just cycling in the air. Don't do it for a long time. Even a minute every hour is better than nothing and build up very slowly. Pots never goes away. There's no cure. You have to know that to get your head round it. However it's highly unlikely we are going to dye of it (unless we have other health issues I guess). So knowing this and trying to overcome the fear is the first step you can take towards trying to get back to normal. If that makes sense. Even tonight. I went to bed and couldn't sleep. So I got up to have some milk. My heart was pounding badly because I don't take the atenalol any later than 6pm so it's starting to wear off. And I've been lying down. But I ignore it. I respect it and sit down but I don't panic any more. If that makes sense. I really hope you are seeing a good cardiologist. Are you in the UK? Make sure you get those hormones checked. Maybe a bit of hurt might help. Let me know how you get on xx

Lynne said...

Hi Lisa. Another thing I forgot to say. The only other test I had that showed up that there was anything wrong was a meal challenge. Trust me I had every neurological test in the book lol. So Professor Mathias told me to try and eat little and often as when you have big meals the heart works harder (that's why when you are in hospital in a heart ward they make you rest after meals). This is why I researched food to try and keep my blood sugars even during the day and adopted the low GI diet. Read up on it in the blog. You are what you eat at the end of the day. I don't know what your diet is like but really think about changing it if it's high in sugars. Also do you eat garlic? I used to eat it all the time but can't touch it now. Twice I've had to call an ambulance when I have had it by accident. I think it's because it lowers blood pressure. If your bp goes down your heart rate goes up. So if you do eat it I would try cutting it out completely to see if that helps. Also do you have a bp machine. I'm guessing yes. If so you can do a poor mans tilt table test on yourself. Sit down. Take your blood pressure. Then stand and take it again. If your heart rate goes up by 30 beats or more then it's Pots. Your blood pressure will go down too between sitting and standing. Even now mine does it and I only have to stand for a minute between the sitting and standing position for it to change. Knowing your body does this helps you to notice what you are doing. So get up slowly. Don't rush up between lying down and standing. One other thing. I think there is some sort of link between the gut and Pots. I'm not a doctor but I just think there is. Ive suffered with mine on and off for years and I'm actually seeing a gastro guy now who is doing a ct. just waiting for that. So get your vitamins checked. Vit b and d in particular. A lot of Pots patients are deficient. You might need to take folic acid and vit d if you are lacking. Some patients need vit b injections. I needed folic acid and d but I've managed my folic acid by drinking lots of milk and yoghurt and and meat. Actually milk is better than water for hydrating as it has salts in it. I struggle with the vit d because I can't eat eggs any more. I love them but my tummy doesn't any more. I get terrible pain. I also think there is a link with high uric acid levels. Mine were high too andwhen they are high it seems like my symptoms get worse. So I'd suggest getting these tested too. I've managed to get mine down from 0.43 to 0.37 but even that's a bit high. So I try and avoid high purine foods and squeeze a lime in hot water every day and drink it with the lemon drink I've mentioned in my blog. My cardiologist mentioned there's a lot of interest in the medical profession about uric acid so who knows what the link is, if any :). It actually does get on your nerves in the end trying to get to the bottom of it lol. So in the most part these days I try not to. I just do everything I know that works. Exercise, good diet, salt loading (though I've cut back a lot on that these days), support tights if I have a bad tachycardia day and hydration. Watch that you don't completely overdo the water or milk though. I drink a cup of water, milk or tea at least every hour. However if you drink pints and pints at a time you just pee out all the salt I think. Sorry I've written so much but I just want to share as many tips as I can to try and help you get better :). Good luck and never worry about asking me. As I say I'm no doctor and I certainly don't have all the answers but I can let you know what has helped me xxxx

Lynne said...

Hi Lisa. Also. Look up Vanderbilt Autonomic Disfunction Centre. Vanderbilt Univercity. I tried to copy and paste the website on here for you but it wouldn't work. I think you will find it of interest and help.

Lynne said...

Hi Lisa. I've been thinking of you. Sorry I didn't ask before but Christmas preparations have been manic :). How did you get on with the cardiologist on 7th? I really hope you got some help

Lisa said...

Lynne..
I had bronchitis
.felt as though I was dying.. Had to reschedule for the 23rd of Dec. Not sure if a cardiologist can help me because my blood pressure does whatever it wants it'll be low for a week and only a little high for a week my pulse is same thing it'll won't go above a hundred and 34 a couple weeks and then I'll be up at a hundred and seventy for a week... the worst part of all of this is nothing you digest really good also my allergies are like 20 times worse than they are worth very hard for me to breathe a lot of dates and this all happened when the pots came around so I'm assuming it's just part of it but I don't know

Lisa said...

Uughh..sorry..speech to text
.!
I'm saying is some days it's hard for me to digest food and a lot of days it's really hard for me to breathe because of my allergies what used to be next to nothing are now like just awful and terrible allergy like symptoms and this all happened when pots came along so I'm guessing it's part of that? I don't know did you have anything like those symptoms

Lynne said...

Hi Lisa. So sorry to hear that. I was exactly the same with my pulse and heart rate. That's the beauty of the paediatric atenalol. It has a very short half life (how long it works and stays in your system). So I can take it as and when I need to. If my heart rate is low I don't take any. The trouble is I think your in the States and I think it's banned over there. To be honest I think it will be banned here soon too so I really don't know what I am going to do without it. Will have to get my GP to do me 20 years supply lol. There are soooo many funny symptoms that happen with pots so it's really hard to know what's going on. Ask your cardiologist about paediatric atenalol and let him do as many tests as possible. If nothing else you must ask to have the tilt table test. That will help them to know what's going on. Really good luck for 23rd. Let me know how you get on. Hope you have a lovely Christmas xx

Lynne said...

Lisa sorry I meant to say. Yes I had lots of symptoms like it but if your breathing is really bad you should maybe consider just going to A&E. don't suffer in silence. one if the reasons I did this blog was because when I got sick there was just nothing out there about Pots. I had to research everything myself. I TrueType believe there is not only a link with hormones but also the gut. From researching foods I've found the low GI diet is the best for me. Organic foods too as much as possible and most importantly eating little and often. I'm not sure if you drink alcohol but if you do stop immediately. It's the worse thing you can do with pots. I did used to drink but since I got sick can't touch it and all the research tells you the same. So look up what I've said on here about diet but obviously tailor it to your allergies. I'd say defo no garlic though. In fact if your bp is up and down I'd avoid most herbs and spices for a while until you become stable. Which you will :). Remember most of all. It's so frustrating but this is a long process. Your not going to get better over night. Once you get your head round that you stop getting stressed. However it is long but you can get back a normal life. I promise :). Just never give in to it. Oh one other tip. You can get shopping trolleys with a pull down chair. From the disability shops. Really for old ladies. However it's a god send. I just got one because even now I am prone to having a turn in the supermarket queue :). It just gives you the confidence to go out and if you feel faint at any time or anywhere you can sit. So it takes the panic away. No one can tell it's got a chair and it's better than a wheelchair because you will still be walking which is soooo important. Hope this all helps

Lisa said...

Oh..I used to drink a bit of alcohol but I no longer can. And I actually just got back from the store..I did use the electric wheelchair
. now it will take me hours or a couple days to recover from that outing.. Grr. The worst part is chest tightness and shortness of breath..uughhh.. And I hope my BP and pulse even out.. My resting P is anywhere from 58 to 78 and my BP 90/60 to 140/90..crazy!!! Does whatever it wants depending on the day or week.. Im doing my best to hang in. Will try to post updates after my Doc appointment!
Thank you😊🌲😊🌲

Lisa said...

Oh..I used to drink a bit of alcohol but I no longer can. And I actually just got back from the store..I did use the electric wheelchair
. now it will take me hours or a couple days to recover from that outing.. Grr. The worst part is chest tightness and shortness of breath..uughhh.. And I hope my BP and pulse even out.. My resting P is anywhere from 58 to 78 and my BP 90/60 to 140/90..crazy!!! Does whatever it wants depending on the day or week.. Im doing my best to hang in. Will try to post updates after my Doc appointment!
Thank you😊🌲😊🌲

Lynne said...

Hi Lisa. Well done for attempting the store. The trick is to keep going out otherwise the fear just gets worse and worse. Also with you pulse and bp. It's all about learning about how to treat what your body is doing. Your resting pulse is ok. What happens with pots is when you stand your blood pressure drops and your heart rate goes up. Usually :). So start comparing during the day and keep a record between now and the 23rd so you can show your cardiologist what's going on. Do a sitting blood pressure reading then a standing one every hour. It may help him if he has evidence of what's going on. Also if you become more aware of what your body is doing you can address it. If you have a bp of 140/90 then your heart rate won't be too high. So don't have any salt for a while until it drops. Still drink water regularly but don't drink a big pint. Then if it drops to 90/60 that's when you should notice your heart rate goes up especially when you stand. Really an adult heart rate shouldn't go over 100 beats per minute unless a person is exercising. So you will notice if your HR goes over 200 that's when you really will start to feel bad. That's the time to eat a bag of crisps and drink a pint of water :). I noticed if I didn't get the balance of salt and water right i.e. If I drank pints and pints of water then I would just continuously pee and I think this flushed out the salt. So I found drinking little and often was best and I only drank a big pint if my HR was very high. If your allergies allow you to drink milk. Milk is the most hydrating drink. More than water or orange juice. It's because it has salts in it. A lot of Pots patients use a Gatorade (I did myself) but it's high in sugar and if your trying to keep your sugar levels balanced I don't think it's a good idea.so I stopped using it and to be honest it didn't really help me. So the best advice I can give you is learn about what your body is doing. However try not to become obsessed. That can just make you worse by worrying. I do still have a bp machine but I only take it if I'm starting to feel my pulse is racing. I just take my atenalol at regular times and top up, salt load and drink extra milk if it starts to race. Whatever happens though work those legs. Even if you do the exercises laying down. You have to get the muscles strong to pump the blood round the body. If you don't do that then I'm afraid you will just get worse and worse and it will take you much longer to recover. I'd see the cardiologist first though before you start doing anything too strenuous just in case you don't in fact have pots. He should do an echocardiogram to determine there is nothing structurally wrong with your heart. It's so much to take in and I'm so sorry your going through this. Every day I know my symptoms could flare up and it's a real pain to live with but once you know your hearts ok it does help you to really start fighting to get fit and exercise because honestly that is a huge part of the recovery. As I said before. Bed is the enemy :). I had chest pains a lot by the way and sometimes in the night I would wake up and literally couldn't get my breath. I think it's because our body's are in fight and flight mode. We are highly stressed and the nervous reaction causes it I think. However you have to be medically checked to make sure because heart problems can cause shortness of breath. That's why I said to you if it's really bad don't just put it down to Pots and ignore it. Get yourself to the A&E for an emergency check. Really good luck. Write any time if you have any questions. Remember though I'm only a patient and not a doctor so I can only share my experiences which I'm more than happy to do :).

Lynne said...

Lisa one last thing I thought of. A really good tip. Lear to feel your pulse in your neck. The left hand supine I find is best. Learn to feel what a slow pulse is like and a fast one. This way. If your anywhere and you are starting to feel a bit funny. You can feel your pulse and it will put your mid at rest. If it's slow then you can relax and not panic. If it's fast then you know that you have to sit or lay down. The heart goes faster because it is trying to keep the blood supply to the brain. By sitting down or laying down the heart will start to slow. That's why I use my shopping trolley. There are still times when I just have to hit the chair :). I've sort many a time in the past laying on the floor in a shop even with my feet raised (raising your feet helps). You feel such an idiot but you get to the stage when you just don't care lol. It's better to go out and make a fool of yourself than sit indoors moping. Especially if you can walk and get the exercise. To be honest a lot of people don't even take any notice. The times I have layer in the floor and people just walked past without even asking if I was ok. Hope this helps. I think being older makes a difference. You just don't care. I do remember as a young woman I was the standing joke. If we went to a pub and it was crowded I'd always faint. So wherever we went my friends used to get me a chair lol. This is what makes me think I've always had Pots but I used to ice scare and go out clubbing and dance all night 3 or 4 times a week so my legs were obviously strong. Throughout my life I was always rushing around like crazy so I was fit. I actually think when I got really sick in 2008 it was because I'd almost had a nervous breakdown and because my heart kept racing 180 beats even laying down. They just kept me in hospital for months and I got so weak and my leg muscles vanished and that's why it took me so long to recover. I was really really sick though so it was just one of those things. So that's why I keep on about keeping as fit as possible and strong to fight this dreadful condition. Just don't give into it :)

Lynne said...

Good luck Lisa for your appointment tomorrow x

Lisa said...

Well I went to the doctor he prescribed me midodrine and told me to exercise. Problem is I'm exercise intolerant and I suspect I have MCAS and Eds. I was diagnosed with hypermobility syndrome but not technically eds..haven't been to see a geneticist or anything.. very hard to get an appointment.. I've been finding myself being stricken by a lot of pulmonary symptoms awful. Shortness of breath tight chest coughing swollen tonsils stuffy nose runny nose post nasal drip headache tinnitus etcetera

Lynne said...

Hi Lisa. I'm so sorry. This guy was a cardiologist yes. Did he run any tests like an echocardiogram. Or a tilt table test. He should of at least done those tests. If not you need to get another opinion. Midrodine certainly is the text book med for Pots. They put me on it whilst in hospital. I got discharged and chucked it in the bin. My skin was crawling and I've never felt so sick in my entire life. Hopefully you will be ok on it but it wasn't for me. I'm guessing your in the states. Do you have insurance to cover all this. Don't give up if not. If you don't like what one doctor tells you find another. It's amazing how few doctors really know about this condition. He is absolutely right though Lisa. About exercise. Honestly I know exactly how you feel. It's the hardest thing in the world but even if you lye on your bed and put light weights on your legs. Then pedal in the air like your riding a bike. Even if you only do 30 seconds per hour. You absolutely have to build up your legs to help pump the blood. Please don't give up. It's so easy to say I can't but you must. Really slowly and really gently. If you don't you will just get worse and worse, become decommissioned. I'm sure your just thinking I'm mad but honestly. I was in hospital for so many months. I was so sick. So I really do know what your going through. You have to fight and never give up. If you need me you know where I am :)

Lisa said...

I didn't do well on the midodrine either.. Ive been eating a low histamine diet and was doing better for several days.. Got on my recumbent bike too.. My pulse is still high, but low 100s not mid to upper 109s.. I also got an appointment on may 1st with a dysautonmic specialist..Then this AM I vacuumed my bedroom and the hallway and the stairs and then when I went and emptied the Dustbin I breathed in a bunch of dust and now I've been having almost asthma attack all day long.. and yet the funny thing is before pots hit me that never would have bothered me!!!!

Lynne said...

It depends on your age I think what your pulse should be when on the exercise bike. Our bike says my husband at 55 shouldn't go over 115 and me at age 51 shouldn't go over 118. A normal adult pulse is between 60 and 100 I think. I know myself if I'm just standing and not exercising if it goes up to 110 I start to feel a bit funny. When I was really sick though it was 160 to 180 lying down. Doing nothing. It's fantastic that you are doing the bike. Even if you just do a minute every hour it's better than nothing. You have so many things going on with your allergies though it's making it really hard. I'm so sorry. May is such a long time to wait but at least you are going to see someone who might be able to help. Did you ask about the paediatric atenalol. Although I don't think you can take atenalol if you have asthma :(. Is there any way you can go swimming. Not on your own obviously and stay in the shallow end but it's a really good exercise for pits. Also see if you can get a cd or if there are any classes near you for yin yoga. It's really good for learning how to relax and it's gentle yoga which is mainly floor based so it's pits friendly :). The breathing problems could be because your body is in fight and flight mode. So the yoga could help to get you more relaxed and help with your breathing. Also try and get books or cds on mindfulness. It's a form of therapy like cbt but it can really help. Not because your crazy because your not but you need to be able to cope with this chronic condition and mindfulness could help you to get your head round it. I hope you feel better tomorrow. Big hug