dianne.fraser

Fantastic!!! Let us all know how you go.

Dianne

Nowwhat

I get neck soreness and soreness at the back of my head that feels as though I've been clubbed with a baseball bat - I'm much, much sicker generally if I don't treat it. My neurological physiotherapist once mentioned that it seemed my muscles weren't releasing properly - I guess she found that my muscles weren't behaving as they were supposed to. It doesn't surprise me, given that almost no part of my body seems to work optimally.....

Dianne

Apache

To explain your symptoms you really do need to find doctors who understand dysautonomia and know what to check. Your anxiety might be caused by an over-production of noradrenaline; your dizzyness and light-headedness might be caused by changes in blood pressure or blood sugar; your problems after eating might be caused endocrine dysfunction or problems resulting from very slow digestion; your sensitivity to medications might be caused by failure to produce an enzyme necessary to metabolise medications or it might be caused by another type of dysfunction of digestion or metabolism.

I was also scanned to within an inch of my life, and there were no significant abnormalities to be seen. I had huge numbers of blood tests, all of which were normal (except when I was anaemic). Like you, I have anxiety and sensitivity to medications.

I really recommend that you read the 'stories' on the DINET website and search the Forum for threads relating to your symptoms.

With best wishes

Dianne

Apache

I'm so sorry to hear that you have been so unwell, and that it has been so difficult to find medical help. A lot of us experience the same weird symptoms that you report - if you search the site, you'll find many relevant threads (including threads about intolerance to medications etc).

Diagnosis is important, and it can be really frustrating trying to find a doctor who is familiar enough with dysautonomia to make an assessment. The DINET website carries a list of doctors others have found helpful - make sure you have a look to see whether any of them are practicing in your area. It is a good sign that your GP was willing to refer you for assessment - many of us have needed to see more than one cardiologist/neurologist in order to find a dysautonomia-aware doctor.

It is common among dysautonomia patients to have many investigations that return a 'normal' result - a lot of doctors don't know what to look for. In my experience, even the oddest symptoms can be explained.

Take heart. You've shown extraordinary resiliance and persistance in getting yourself to this point - you may be feeling dispirited, but you might be closer to the answer than you think.

Good luck with finding a dysautonomia-aware doctor - I hope that the DINET website can point you in the right direction.

With best wishes

Dianne

Hi Julie. The first time I tried Lexapro I persisted with it for around 6 weeks (taking it first thing in the morning) - one of my workmates was a former drug rep for Lexapro, and she said the insomnia was a common side-effect that generally subsided after a month and a half. It didn't subside for me, and I didn't want to take additional medication to address it (eg a sedative that might have impacted on my respiratory system). I also couldn't live with the tinnitis. On the whole, although it relieved my breathing difficulties during a crisis, it made life a lot harder on a daily basis, and it was particularly difficult to keep working while trying to cope with the side-effects.

I consulted with the drug company, only to be told that given there had been no clinical trials of Lexapro with dysautonomia patients they were unable to provide advice on the expected side-effects, benefits or optimal dosage.

Right now, I'm able to use self-management approaches to keep my health in balance - no drugs at all - but I would take Lexapro again in the short-term to address breathing difficulties in a crisis. Basically, the better I manage my illness, the more likely my symptoms are to sleep. At present, even my fatigue is sleeping - I'm the most alert I've ever been in my life since cutting back my carbs fairly dramatically in August. I become fatigued really quickly if I don't get enough rest, or stop my basic dysautonomia management (or eat too many carbs at one sitting), but overall I'm doing well.

With best wishes

Dianne

SJ

The Lexapro gave me stomach soreness almost immediately (eased by the zantac); tinnitis and chronic insomnia followed after a week or so, then I became hyperalert and a little manic. I've tried it a couple of times - same result, even when I take a miniscule amount and don't take it every day.

A lot of us have poor tolerance to medications - me too. I just accept it now, and I use self-management approaches to keep my health on an even keel. As long as I tread carefully, avoiding anything that aggravates my illness and doing things that soothe it, I'm more functional and less fatigued now than I have been for many years. I used to dream of finding a pill that would fix it all for me; now I accept that, for me, there probably isn't one.

Good luck with the allergy specialist - let us know how you go.

Dianne

Sj - Lexapro is an SSRI. I have to cut it in four and take it with half a zantac, and I can't take it two days running, but it eases my breathing problems at night when they occur and gives me confidence that I'm not going to suffocate in my sleep during big exacerbations.

I tried a couple of beta blockers, but failed to tolerate them - one gave me every possible side-effect; they both seemed to amplify the effects of my illness if I did anything to aggravate it eg standing too long or flying.

Dianne

Hi - good question! I'm a 45 year old Australian - 1/2 Irish and 1/2 English on my mother's side; 1/2 Irish and 1/2 Scottish on my father's side.

Dianne

Hi. I have breathing difficulties when my illness is more active. The sicker I get, the more strained my breathing feels generally, as though I'm trying to suck oxygen out of a really thick fog - I just don't feel as though I'm getting enough air. During exacerbations of my illness I sometimes also get breathing difficulties at night, when my body seems to forget to breathe

Two medications have helped in the past. First, I was treated with steroids when my immunologist was trying to settle inflammation from an underlying mystery disease (presenting as the anaemia of chronic disease) - I was prescribed predmix (usually given to children, I think) and on my second dose it felt as though my lungs expanded properly for the first time in my life - my breathing felt effortless. It was wonderful.

The other medication thats helped is a small dose of Lexapro - I can't take it for very long, but it really eases my breathing and, during a time when I was very sick, it seemed to completely stop my night-time respiratory problems.

Finally, I rest for a month during mid-summer and mid-winter - my body struggles the most when the weather is very hot and very cold. I don't fight it any more; as soon as I realise I'm going downhill, I focus on doing the things that soothe my illness - rest, regular fluids, gentle bodywork, low carb diet, active measures to stay cool when the weather is hot, active measures to stay warm when the weather is cold, avoiding anything that aggravates my illness (eg flying; overwork), treating symptoms (like nausea and muscle soreness) etc etc etc.

Good luck - I hope you're feeling better soon.

Dianne

JoeJack

The autonomic nervous system controls processes that impact on how well we can process medications, including metabolism and digestion. I see my sensitivity to medications as just one of many impacts of a dodgy autonomic nervous system. My thirst isn't properly regulated, either is my digestion, the metabolism of my carboydrates, my heart rate and blood pressure and, during crises, my breathing and bladder function. It goes on and on, really. There are so many things that my body doesn't properly regulate, that its failure to regulate the metabolism or digestion of medications really doesn't shock or surprise me.

There are cases like Endures' in which damage to the autonomic nervous system has been caused by a sudden catastrophic event, leading to medication sensitivity and a lot of other symptoms of dysautonomia. In my case, I think that I have an underlying mystery illness that caused physiological damage slowly, over many years, with an increasing impact on my autonomic nervous system's capacity to regulate anything properly, including the processing of medications.

Dianne

Endure

Did you get my pm? There is a research group that I think might be interested in your case.

Dianne

Endure

I know you only check in occasionally - I hope you see this message or notice the PM I sent you today. I skim the health-related press clippings every day as part of my policy job, and today I saw a short article on a study being conducted by the Queensland University of Technology on the effects of ecstasy on the brain development of young users. They're recruiting now, if you're interested in following up. The contact is Dr Leanne Hides and her email address is echeckup@qut.edu.au

Even if you can't participate or don't want to, they may be interested in your case.

Good luck and best wishes

Dianne

Friday

Sorry to hear that you've been having so much trouble with ear infections - it sounds painful and frustrating. I don't know whether it will be helpful, but Dr Andrew Weil's book 'Spontaneous Healing' talks about a cranial osteopath who treated ear infections and a lot of other things with great success. The book only discusses treatment of ear infections in babies and children (on page 35-36 if you can get hold of a copy), but I guess the same principles might apply to adults. Apparently a documentary on it was made through the University of Arizona.

I found myself a cranial osteopath after reading the book, and I wouldn't be doing as well without him. I've tried absolutely every alternative therapy known to man, and this was the only one that worked at all (here in Australia, osteopathy is still fairly alternative).

Maybe something to consider if you get to the point where you feel you've run out of options.

With best wishes

Dianne

I gave a 'none' response because I had all of my amalgam fillings removed more than 10 years ago (I think I had 11 or 12). I had no idea whether they were contributing to my illness, but at the very least they were cracking my teeth - unless I had them removed, I would have eventually needed a lot of expensive crowns. The fillings were removed by a holistic dentist (using a dam) who also had me tested for sensitivities to the products that could be used instead.

I was very sick during the period the fillings were replaced and in the 12 months or so afterwards, but my illness was undiagnosed at the time and I didn't have any idea how to go about managing it. I think I would have been much more well (or that I would have recovered more quickly) if I'd known the basics of dysautonomia management - I would have known that there was the possibility that my illness could be aggravated, and I could have taken steps to contain the impact.

I'm really glad I had the fillings replaced, and I'm very, very mindful of my dental health these days. A lot of substances don't agree with me - removing them (or limiting my exposure) really is necessary if I want to maximise my functioning.

Good luck and best wishes

Dianne

Maggie - thank you for your response. Its a relief to know that there is at least one good reason for the medical sensitivity experienced some of us - perhaps a common reason some of us cannot tolerate even small doses or slowly 'titrate up' to a 'therapeutic dose'.

Dianne

Neshema

I haven't tried D-Ribose, but I've reacted poorly to a lot of medications and supplements (most recently, I've done poorly on vitamin B - go figure). If there is something I want to try, I'll introduce it slowly and monitor my response - if I don't do well on it, or if I'm not clearly benefiting, I'll stop it. At times, I've needed several months or more to recover from a substance that has knocked me sideways. I wish I had better tolerance of medication and supplements - I just don't. For me, my focus has had to be primarily on non-drug management options - rest, fluids, low-carb diet, gentle physical therapy, compression stockings etc etc.

Good luck and best wishes

Dianne

Sandy

I used to work with a woman who had Crohn's - a disabling autoimmune disease that caused really terrible abdominal pain during flare-ups. There are so many different GI disorders that can cause the same symptoms - I hope that your gastroenterologist doesn't give up before checking the full spectrum of possibilities.

Nope, you're NOT crazy.

Good luck and best wishes

Dianne

I don't fly any more for work because it aggravates my illness - I tend to be ok in the air, but I'm overwhelmed with nausea and fatigue on landing (even on a 30 minute flight). The next time I'm well enough to fly out for a holiday, I'll allow 24 hours to lay flat after getting off the plane.

Good luck and best wishes

Dianne

I started out as a nurse too, but had moved into health policy (along with many other nurses) well before I got my diagnosis. Every day that I work is hard, even though I work at a desk job and allowances are made for my illness (no flying - it aggravates my symptoms; few meetings - I have panic attacks when I try to speak to crowds, and the anti-anxiety medication dumbs me down so that it is difficult to participate as I need to; leave each year in January and July - my body doesn't cope well with hot or cold weather, so I rest during the worst of it).

I'm planning to apply for a partial invalidity next year in the hope that I can move onto a four-day week without a big financial penalty.

I need to keep working because I will lose my home if I stop - I need to provide for myself. Every day that I work is hard, but its another day that I've paid my mortgage and contributed to my superannuation.

I think there are a lot of health professionals on the forum because a lot of us have needed high levels of health literacy to get a diagnosis - there are people who are less fortunate, who don't have the resources to advocate for themselves or do the problem-solving that our doctors sometimes cannot do, and for whom a diagnosis will never be made.

With best wishes

Dianne

Hi. I understand that dysautonomia is a reasonably common complication of poorly controlled blood sugar.

I've also found a lot of relief in a low carb diet - my fatigue levels are much, much lower and my overall functioning better as long as I restrict the total amount of carbs I eat at any one sitting.

I'm so glad you found your answers so quickly and that you've regained your functioning.

With best wishes

Dianne

Justin

I've tried an SSRI (Lexapro) a couple of times - both times, even at the smallest possible dose, I had to take it with half a zantac or I'd get severe stomach soreness. I only tolerated it for a short time before I became sleepless, hyper-alert and a bit manic, but I also had relief from respiratory symptoms, improved cognitive functioning and temporary relief from fatigue.

I haven't yet found a medication I can take on a daily basis, but I'm glad I tried it and I would have stayed on it if the side effects hadn't been so severe.

Good luck and best wishes

Dianne

It seems to take much, much longer for me to recover from viruses and other infections, and they are usually accompanied by an exacerbation of my dysautonomia. BUT, last year I was declined a vaccination by the nurse administering H1N1 vaccinations at my office, and then my doctor declined to vaccinate me - I think she was unsure how my body would react, and she didn't want to bring on a big exacerbation.

I haven't caught the flu for the past couple of years - I guess I've just been lucky. I also rest for a month in mid-winter because my illness is aggravated by the cold - this reduces my exposure to people, so it reduces my exposure to viruses.

Dianne

Jonathan

Follow your instincts. If you felt it was for the best to stop working and concentrate on your health, I think that most people on the Forum would encourage and support you. But if you want to keep working, there may be things you can do to make life easier.

I work full-time, but at a desk job. I don't cook during the week - after at least a day of rest on weekends, I'm generally well enough to shop for groceries and cook three dishes which I eat through the week. I'm very tired, but with the basic approaches to self-management, I am able to keep working. I schedule fluids because I have no thirst, I wear compression stockings to help reduce my fatigue, I minimise physical activity and carb intake, I'm mindful of the temperature because my body doesn't adjust well - I buy four weeks of extra leave every year so that I can rest during the hottest and coldest months, when my body struggles the most. I treat the symptoms I'm able to treat, and (even though I work full-time) I get enormous amounts of rest. It is just after 7pm here in Canberra Australia, and I'm getting ready to curl up in bed and read.

I've shed tears, too, at the thought of giving up work - there are plenty of times that I thought I simply couldn't keep going - but I've always found better ways of managing my illness, or adjusting my working arrangements, which made it possible to continue working.

Last year I found myself despairing when I failed to recover from an exacerbation of my illness, and I took 5 weeks of leave - I cried for the first 24 hours, but then set about formulating a concrete plan to get myself on my feet again. This rest really helped me to regroup and to crystallise my thinking - I was still very unwell when I returned to work, but I was emotionally stronger, and I had a concrete 'recovery' plan.

My life is not ideal, but there are very real financial, intellectual and emotional benefits to working.

Whatever you decide, I wish you well.

Dianne

I'm with Todd and Blue on this one - I would need to see published studies on this issue, and to know which sub-groups of people with dysautonomia have been studied, across which ages, for how long and with which treatment options.

I would also want to know how 'recovery' is being defined - as a patient, I might not agree with the definition used. 'Recovery' does not necessarily mean 'cure', and it does not necessarily mean that full functioning has returned.

Dianne

Jodie

I'm in Canberra. Welcome to the forum - I think you'll find it a really wonderful source of comfort, support and information. It really is lovely to find others who are facing similar challenges.

After a lifetime of illness, two years ago I was diagnosed with cardioneurogenic syncopy. Like Endure, I don't tolerate medications well, but I use the non-drug approaches to dysautonomia self-management.

It can be difficult to find medical help with our illness, wherever we are in the world, I think because doctors rarely see it. I'm so glad that you'll be seeing a doctor who is familiar with dysautonomia and who might be able to discuss different treatment options with you. Good luck and best wishes.

Dianne