clairc

Thanks for the replies. I only took one dose which was 0.05mg (half a 0.1mg tablet) The tablets are so tiny I don't think I could manage to cut them into quarters. I have left a message for my POTS nurse to call me back on Monday. I still have a splitting headache, I've barely been able to function all day. It feels like my head is being crushed, but only on the left hand side. I've never experienced pain quite like it. I don't get migraines and rarely get headaches unless I have a sinus infection.

Hi! I just started on fludrocortisone today but I think I've had a reaction to it. I took it as prescribed this morning but an hour later I had a really bad headache on the left side of my head, like someone was crushing it in a vice and the left hand side of my face went all numb and tingly. The only way I can describe is it when you've had an anaesthetic at the dentist and it starts to wear off. I took medical advice and saw the emergency doctor at the hospital who didn't really know much about POTS or fludrocortisone. They ruled out stroke and told me to go back if things got worse. They didn't know if it was caused by the medication or something else. One thing they noticed my blood pressure was pretty high. It's normally around 100/60 but at the hospital it was 140/68. Has anyone else had a similar reaction to fludrocortisone?

It's not just Prozac. I've had problems on tramadol which I believe affects serotonin and works in a similar way to SSRIs. It made me very spaced out but also quite aggressive at times and it stopped me from sleeping (which is something that the Prozac did too) The tramadol withdrawal was unbearable too so I'm very reluctant to take anything that affects serotonin, even if small doses. I should have guessed it wasn't a good drug for me the first time I took it and had a terrible hangover when it wore off. I wonder if there are any identifiers that would predict if SSRIs would be helpful or not without actually taking them. Do they work better on certain kinds of POTS? Or is it just down to individual cases?

I don't know if SSRI's can cause dysautonomia but I do know that Prozac does not agree with me, which is why I started the thread. My POTS nurse said they are the ONLY class of drug to help balance the autonomic nervous system but my experience of any drug that alters serotonin levels has been negative which is why I am very reluctant to try them I went from being a balanced teenager to being manic and suicidal on Prozac, which is not something I want to repeat. I also had a terrible time coming off Tramadol, which acts like a SSRI. I've been through Tramadol withdrawal three times and I would not wish that on my worst enemy. I have three young children and I cannot risk taking either of those drugs again. I'm glad that SSRIs work for some people but I'd like to know if there are any other treatments that could lessen my symptoms. I have a hard time controlling my pulse, blood pressure and body temperature. If my body gets cold I get a fever yet I can be shivering under a blanket when everyone else is too hot. If I stand my systolic falls and my diastolic rises, my pulse increases and I get dizzy and short of breath. I am unable to exercise, I am very disabled and any exertion makes my symptoms 10 times worse. I am seriously struggling to cope with looking after myself at the moment but the only option is drugs that I know will make me ill.

I was given Prozac many years ago when I was misdiagnosed with ME/CFS. It basically made me manic. I was either laughing or crying all the time. I am a highly motivated person already but it pushed me to be physically active beyond my capabilities which made my joint pain and fatigue flare up so badly I crashed, got very depressed and didn't want to live any more. I went back to my normal self after I stopped taking it. I have not had any mental health issues since so I presume it was caused by the drug. My extreme reaction means I don't want to take a drug of that class again but my POTS nurse says it's the ONLY thing that will regulate the autonomic nervous system. I feel a bit stuck. I can't risk the mania and depression again because I have three children to care for but my POTs is causing me severe problems in my daily life. I'm stuck in a catch 22 situation, if I take the drugs I get sick one way, if I don't I get sick another way. I wondered if there any other options, treatments or medications I could try? Or are SSRI the only treatment?

Rubber gloves. That's what I use to put on compression stockings. I can't manage without them. I get packs of the thin latex disposable gloves and they grip the fabric of the stockings so you can pull them up properly. It still pulls at my joints and it's still a bit of a struggle but they really do help.

Hi! I've just come back from a visit to the POTS clinic and the nurse told me that SSRIs are the only things that will regulate the autonomic nervous system. I'm not on any medication for POTS at the moment but my symptoms are severely affecting my life. I do not faint but I do get weak, breathless and dizzy when I stand, blood pools in my feet and legs and I have trouble maintaining my body temperature. I can't exercise, I can't walk more than about 50 yards on a good day with the aid of a walking stick, I can't get out of bed on a bad day. She said SSRIs will help with my symptoms but I have had bad reactions and severe withdrawal symptoms from medication that changes serotonin. My POTS is probably secondary to Ehlers Danlos Syndrome, I also have autoimmune issues too. Have people found SSRIs helpful? Or are there better medications to try? I'm waiting to see if the consultant will prescribe fludrocortisone but I've been asked to keep a record of my blood pressure and pulse readings for a week because my TTT were negative and my symptoms don't seem that severe on paper.

Thanks for the suggestions. I guess I'm just trying to understand everything better. So many health care professionals have recommended swimming and they don't seem to appreciate how ill it makes me feel. They assume I am unwilling to attempt exercise or blame my problems on doing too much too soon. I don't seem to be able to improve on any kind of exercise I try, it just makes everything worse. I recently saw a physio about my joint hypermobility syndrome and the only help they can offer is hydrotherapy but I'm reluctant to take it following my post swimming experiences. Unfortunately no-one is really interested in finding out why I get such severe symptoms upon leaving the water so I'm pretty much on my own here.

@Spinner I have POTS secondary to Joint Hypermobility Syndrome. I have a lot of joint and muscle pain, and hot baths are very helpful im that respect, although they do temporarily worsen my POTS symptoms. I don't do well in cold temperatures. My muscles go into spasm and it takes me a very long time to get warm again. I guess we're all different.

The more I think about it the more I think it might be a sudden drop in blood pressure when I get out of the pool. The water applies pressure to my body when I am upright, kind of like a giant compression body suit. As soon as I get out of the water that compression is gone and my body has to work very hard to cope with the transition, and that's on top of coping with a temperature change (warm water to cooler air) fatigue (having to work harder to move on land than in water) and trying to keep my balance walking with a stick on the wet poolside floor. My POTS isn't really under control at the moment. I'm not on any drugs, just fluids and more salt in my food. My POTS nurse wants me to exercise more to improve my symptoms but I think swimming is not the best choice of exercise for me as it just makes the symptoms so much worse.

Thanks for the replies. Apart from a slight difficulty in breathing (which I get in high humidity) I felt great when I was in the water. It was only when I got out that I started to feel very ill. I have hot baths to help with the joint pain and whilst they do flare up my POTS symtoms sometimes, they do not affect me in the same way. The bath water is hotter and I can stay in there for longer than 30 minutes so I don't think it was just the temperature of the water, although that may have been a factor.

I can't exercise either. Walking makes my joint pain flare up, cycling kills my knee, I can't do a recumbent bike because of my hips and swimming puts me in bed for two days. It is frustrating because I want to improve my strength and fitness but it only makes things worse. I feel like I'm in a catch 22 because everyone says I must exercise to get better but every time I try I end up being able to do less than before. One thing I have started doing it Pilates with a private instructor. I am able to do some of the level 1 exercises and it doesn't affect me like other forms of exercise. I am lucky to have a great instructor who is also a physio and she adapts any exercises that I struggle with. It does make me feel a little light headed sometimes as it's all done on the floor but last time I used a wedge so I was more uprigth and that felt better for me. Maybe it's something you could look into?

I think their reasoning is plausible but it's a big step to assume that retraining will decrease deconditioning and improve symptoms for everyone. We know that POTS is a syndrome, it's not a disease it's a collection of symptoms which can have many different causes. Deconditioning is known to cause POTS and retraining can improve those patients, but as many people have said, they were in good physical condition before they started with POTS symptoms and they became deconditioned because of having POTS. To me that suggests the deconditioning is caused by the syndrome, not the other way around, and retraining may not be possible due to whatever is casuing the POTS. In my case that is Joint Hypermobility Syndrome. I've been stuck in this catch 22 situation for over 20 years. The doctors tell me that I will feel better if I exercise, but even the most gentle exercise makes me considerably worse. I am not in poor condition because of laziness, depression or fear of moving. I have soft tissue rheumatism in just about every joint in my body and a circulatory system that is inefficient. Retraining me causes pain and stresses my body which flares up the POTS symptoms even more. It's a vicious cycle and I'm not sure how to break out of it.

The link doesn't work for me but I think this is the same paper: http://www.functionalneurology.com/materiale_cic/673_XXVIII_1/5810_comparison/article.html

Thanks for the replies! I didn't feel like I'd overdone it in the pool. I felt pretty good apart from being a little breathless, but I always get like that in humid conditions. As soon as I started to feel tired I got out, then it hit me. It was like being hit by a truck, my body and brain struggled to function and I felt dreadful. I don't know what my blood pressure was when I got out of the pool but by the time I got home it was a little lower than normal. My temperature was also a little lower than normal. It's almost like my body can't handle the transition from water to land. I posted this on another forum and a couple of people wondered if it was the compression effect of the water and then the loss of it when I got out. I am pretty deconditioned, I've been ill for 23 years, only diagnosed with POTS and joint hypermobility syndrome last year. Everyone wants to me exercise to improve my POTS but I feel like I'm in a catch 22 situation because my POTS symptoms are preventing me from exercising. What is the point of spending 30 minutes in the pool doing LESS than my physio wants me to do, when it makes me feel so ill I have to spend the next 2 days in bed recovering doing LESS than I normally would. That's not improving things, that's making them worse. I have started private Pilates lessons but I am struggling with it. Being on the floor and the slow breathing makes me very light headed and dizzy and pelvic pain from adhesions makes it very painful to tighten my pelvic floor. I'm going to try and continue thought, at least it's doesn't make me ill like swimming does, or cause my knees and hips to flare up like cycling does.

Hi! Does anyone else here get severe symptoms after swimming? I went swimming with my family on Friday. I am in poor physical condition, I can only walk very short distances and several health professions have recommended swimming as being great for someone with joint hypermobility and POTS. The trouble is every time I go swimming I am hit with severe symptoms when I get out of the pool which last for a couple of days. I went in the shallow teaching pool, the water temp was 32C (89F), I spent 30 minutes in the water just floating, holding on to the edge and floating my legs out and I swam a few of widths, no more than 50m in total with a breaks in between. As soon as I got out of the pool I felt ill. The usual feeling that your body is ten times heavier out of the water didn't go away, I could barely put one foot in front of the other, I felt dizzy, incredibly weak, I found it difficult to talk and my speech was slurred. When I tried to get changed I realised I was shaking, I was also very pale. I felt like this for the next 24 hours, My pain levels also increased even though I did very little exercise. 48 hours later I still feel pretty rough and I've been dizzy all day. This happens every time I go swimming. I posted my experience on another forum and a couple of people suggestion it might be a autonomic dysfunction thing. I've been offered a few hydrotherapy sessions but I'm cautious about taking them. If I get so sick after 30 minute relaxing in the pool how could I cope with an hour of exercise? Does anyone else get like this after swimming? Have you found anything that works to relieve the symptoms? Clair

My mum understands that perfumes affect me and she usually avoids wearing anything when she visits. In the past I have been accused of being 'funny' with her about it but now she does understand but unfortunately she forgets that things like deodorant, skin cream and wet wipes contain fragrance. She can get quite defensive and takes it very personally when she slips up. On this occasion it was impossible to avoid her. We went to see my daughter's school play and had seats next to each other. My daughter is only 9 years old, I couldn't let her down by not going and I couldn't ban my mother from watching the show. Thankfully the antihistamine and ventolin helped lessen the symptoms so I could still enjoy the show but I was left feeling ill and exhausted by the experience. There are other situations where avoidance isn't possible, like in waiting rooms, public transport, hospitals etc. I almost missed a hospital appointment once because someone had sprayed an entire can of air freshener in the entrance hall and it choked me so badly I had to leave. I don't think wearing a mask would help. Thankfully these situations don't arise very often and I'd have to wear it constantly to avoid the one or two times a week when I encounter something that doesn't agree with me.

Hi! Does anyone have any tips on dealing with perfume allergy or sensitivity? I've always had problems with perfumes, there are a few I can tolerate but most make me feel ill. Within seconds of smelling them my nose stuffs up, my eyes start stinging, my head hurts and I start wheezing. I try not to have any strongly fragranced products in the house but sometimes I can't avoid them. Yesterday my mother came to visit and as soon as she got near me it triggered my symptoms. In the past she has accused me of being rude or exaggerating but as soon as the scent hits me the symptoms start and I can't hide the fact my voice sounds like I have a head cold or the wheezing when I cough to clear my throat. My mother denied wearing anything perfumed but she did admit to using a fragranced wet wipe prior to visiting me. It kind of spoiled my afternoon as we were going to watch my daughter in her school play. I knew I'd have to sit next to her for the next 90 minutes so I took an anithistamine and used my son's ventolin inhaler (which I've been prescribed in the past for breathing difficulties). That minimised the reaction but I still felt very weak and dizzy. I'm never sure what to do in these situations. Has anyone found anything that helps?

I can't seem to increase my physical activity at all. Even the simplest things make my symptoms much worse. I recently started doing Pilates and even 5 minutes of level one exercises can leave me wiped for the rest of the day. I did them yesterday and now I'm paying for it with pain, weakness and feeling like I have the flu. I've been advised to do swimming, water aerobics and tai chi but they are all too advanced for me and if I try it makes me quite poorly, I shake uncontrollably, my skin goes clammy and my strength is wiped out. I really want to try and improve my fitness, I can barely walk 50 yards with a walking stick but I feel like I'm taking one step forward and two steps back.

Hi! I'm having trouble coping with edema at the moment. My lower legs are swollen up so much that I can't wear my knee high compression stockings because they roll and dig in. They fit me fine 2 weeks ago and I'm really struggling without them. I don't know what to do. I have yet to find a pair of thigh highs that fit because I'm short and fat. I can't afford to buy made to measure and the ones I got on prescription didn't fit and the fabric made me itch like crazy. I tried ankle braces but the swelling in my lower legs bulged over the tops. I don't know what to do! I'm having trouble with my right hand swelling too. Every time I use it to do anything it swells up and my fingers are stiff. It's not painful but it is quite uncomfortable. The swelling goes down after a while so every time I show my GP she said it isn't swollen. Does anyone else get swelling like this? I manage my POTS with increased fluids and salt but I'm not sure if this is making the swelling worse. Clair

Hi! I don't know if this is a POTS thing or not but recently I've noticed my hands swell up when I use them, especially when I'm cooking. This morning I was making flapjacks with my daughter and PA, I was melting the butter in a pan on the hob when I noticed my fingers felt stiff and my hand had swollen right up. I was only stiring for about a minute (can't stand up much longer than that!). I've noticed it hapen other times I've been cooking and stiring things, like checking on pasta or stiring spaghetti sauce. It's not exactly painfull but the pressure is uncomfortable and it's hard to move my fingers. Thankfull the swelling goes down after a few minutes if I stop what I'm doing. It happens to a lesser extent when I do other things with my hands such as using scissors or playing my keyboard. My right hand is worse than my left, I'm right handed and do have issues with my right arm, chronic tennis elbow, shoulder impingement and a weird swelling of my upper arm but no-one knows why. Has anyone else had this problem? Clair

I feel worse during and after. If I push and try and carry doing simple, gentle exercise, after a couple of weeks I crash completely. I usually end up with an infection, or infection symptoms like chills, fever, sore throat, sinus pain, UTI. Even gentle exercise seems to cause injury. I can't cycle more than 30 seconds on my exercise bike without my knee ceasing up. Swimming is no good either as my body can't cope with the temperature changes and the exertion getting out of the pool and changed again. Even if I only spend 20 minutes floating in the warm baby pool I will have shakes, chills and nausea for the next 3-4 hours. I really wish there was something I could do but I haven't found it yet.

I don't do those things all the time! I'm lucky if I can do anything for 20 minutes straight but I give it a go. I'm a highly motivated person and I find focusing on things helps me deal with the pain I have. Spinning is surprising theraputic. I have a double treadle wheel so if one of my legs is bad the other one can take the strain, plus you get georgous yarn to knit with My writing has been very theraputic. I've had an injury to my shoulder and elbow that means I can't knit at the moment so writing has taken it's place. I write everywhere, in a notebook with my fountain pen, at my desktop PC and even in bed with my tablet and portable keyboard. Once I get an idea in my head the words just flow. I guess I'm lucky to have so many creative outlets.

I have become the queen of crafts through being housebound. I knit, crochet, spin and dye my own yarns. I sew, embroider and cross stitch. I do paper crafts such as card making, teabag folding and I am learning how to air brush the body shells for my husband's radio crontrol cars. I recently rekindled my love of creative writing. Last year I wrote 4 novels and I have self published 3 of them. What with looking after a husband and 3 children under the age of 12 I don't have time to be bored!

I took Tamiflu a few years ago when we had the Swine flu epidemic. Within half an hour of taking the first dose I was violently sick. I spent the next 2 hours on the bathroom floor, which was not pleasant considering I had a high fever and in severe pain. I don't even know if I had the flu, I probably just had another sinus infection but the doctors weren't doing home visits because of the flu.