Has Anyone Taken Pristiq? Doctors In Tucson Az

[dizzycoco]

Hello All!

This is my first time posting but I have been reading and am glad to know I am not alone!

I developed POTS after a very minor surgery back in June and have been dizzy ever since. I'm still working full time and that is a small miracle. Overall I think that it is slowly getting better on it's own as I know I am less dizzy then I was 30 weeks ago but....

I have tried Metroplol, (did nothing) Bistolic (gave me severe shortness of breathe) Midodrine (I loved it! Was working so well until I got continues chest pains) and finally Flourinef (my dizziness which is my main problem got worse) and now my doctor has given me samples of Pristiq which is a SSRI/SNRI. The side effects are kinda freaking me out and I'm hesitant to take it. I'm not having any mood issues and I'm so sensitive to meds now (all of the above I took half of the smallest dose possible) and this drug you can not cut. Has anyone taken this? What were your experiences with it?

Also, I live in Tucson and I had my tilt table in Phoenix at Mayo but they are not on my insurance and I haven't been back. Does anyone have doctors they would recommend in Tucson? My neurologist has never seen POTS without syncope and has only seen a few POTS patients overall. Has anyone gone to the U of A integrated medicine clinic? My doctor just seems at a loss of what else to try and I thought I'd see if any doctors in the area had more experience.

Thanks and let's hope for a happy and healthy New Year for us all!

[dianne.fraser]

Hi. My doctor trialled me on Pristiq during my last exacerbation. My bladder was failing and my night-time respiratory symptoms had recurred, and she was trying to dampen down my autonomic nervous system in the hope that the symptoms would settle. I tried Lexapro first (an SSRI) but the side-effects were too severe, including chronic insomnia. It was then that I was prescribed the Pristiq, which my doctor thought might settle my symptoms without keeping me awake. I took a half dose, then a quarter dose the next day because I was feeling quite zombie-like. I didn't take another dose, because I got in my car and realised that I didn't know how to drive it - my cognitive functioning had gone into a rapid decline, and I didn't really recover for many weeks.

I know that there are people who persist with a new medication for weeks, even if they're doing very poorly on it, so they can be sure of whether or not there will be any benefit, but I also work full-time - if I can't think, I can't work. Working is an endurance test, even at the best of times - I generally don't take or do anything that makes it harder for me to keep earning a living.

Its important to note that there is a wide variation in responses to medication among the people participating on the forum. You might do really well on Pristig. I'm glad I tried it, but I'm equally glad that I stopped it as soon as I knew it had disagreed with me. To date, I haven't found a medication that helps without also inflicting significant harm. I've had my best results from non-medication approaches.

Good luck and best wishes

Dianne

[dizzycoco]

Thanks so much Dianne!

If I may ask what type of non-medication approaches have worked for you? I'm moving towards more none medication approaches as of late (high salt, reiki, small meals, high water intake) and looking to try anything I can!

Thanks!

CoCo

[dianne.fraser]

CoCo

Most importantly, I guess, I'm aware of the things that aggravate my illness (including exercise, physical exertion, flying, high carb meals, lack of rest, over-work) - I avoid them where possible. My illness is also aggravated by any kind of infection, and my recovery is very slow afterwards.

The things that soothe my illness are sleep, rest (particularly laying flat), relaxation, a healthy, low-carb diet and regular fluids (I don't water-load, but I schedule fluids because I have no thirst). My body doesn't seem to warm or cool itself properly these days, so I take active measures to deal with changes in temperature. I also have scheduled bedrest twice every year (January and July) - so that I can rest through the hottest of summer and the coldest of winter. I'm on my summer break right now.

If I tend to all of these things, most of my symptoms sleep. If I don't tend to them, I become symptomatic quickly. If I really aggravate my illness, I become anaemic - bedrest is the only thing I've found that fixes my anaemia (it has never resolved with iron supplements, so I rarely take them).

I wear compression stockings most days (not the days I'm able to rest a lot) - if I'm on my feet without them for too long, I get very fatigued.

I've also found that I'm much more functional if I actively treat symptoms. For nausea, I take ginger and peppermint. For my neck pain and soreness at the back of my head, I have gentle physical therapy (I use cranial osteopathy and neurological physiotherapy) - this also stops the numbness and tingling I sometimes get in my hands/arms when I'm sleeping. I see my physical therapists every 2-3 months at present.

Laying flat generally eases my respiratory symptoms (sometimes it feels as though I'm trying to suck oxygen out of a really thick fog; other times I've woken at night gasping for breath as though my body has forgotten to breathe).

The Lexapro also eased my respiratory symptoms, and I would take it again as a short-term measure, if it was necessary. The other medicines I have found to be effective in the short-term, are infant ibuprofen (which stopped my night-sweats) and Lexotan (for anxiety and panic attacks) - although, the better I manage my illness, the more likely all these symptoms are to sleep.

I understand that the people most able to manage their dysautonomia successfully are those who have sourced it to an underlying illness. I saw a metabolic specialist before Christmas and she suspects I have a genetic condition causing a dysfunction of my carbohydrate metabolism - hence my problems with exercise and carb intake that can be tracked to way before I was diagnosed with dysautonomia. For other people with dysautonomia, exercise is necessary to maintain functioning - it just makes me very, very sick.

Good luck with finding the management approaches that work best for you.

With best wishes

Dianne

[sue1234]

Diane,

I may have asked you already, so sorry if I am repeating here!

Can I ask what your metabolic+glucose metabolism issue is? What issues do you have with glucose?

[Darlene]

When I was diagnosed with dysautonomia I was very, very ill. I was prescribed metoprolol and lexapro. These 2 pills gave me my life back.

[dianne.fraser]

Sue

I haven't yet been assessed or diagnosed with a metabolic disease. The metabolic specialist I saw before Christmas is referring me to an Adult Genetic Metabolic Diseases Unit, and she wants to come with me to consult a metabolic geneticist before making a decision on what I should be screened for. Apparently there is a series of conditions affecting carbohydrate metabolism at various points in the process, some of which are characterised by dysautonomia and some of which cause dysautonomia if they're not managed. The specialist rattled off a list of possible conditions, only one of which I'd heard of - glycogen storage disorders (one of which is characterised by carb and exercise intolerance, one sub-group of which is characterised by weakness rather than the muscle cramps that seem to feature in all the others).

I've been limiting my carbs for years in order to manage my fatigue. I've been having a diabetes check every year - always normal in spite of becoming extremely fatigued following big carb meals. I had a glucose tolerance test years ago, and the result was normal, but in the hours afterwards I became increasingly debilitated - I was at my sickest the next day, and it took many days to recover. And, when the feeling came back into my feet on the day of the test, some of my toes ached, and continued to ache for days afterwards. Anyway, I refused to have another glucose tolerance test, so my annual diabetes check has usually comprised fasting blood sugar and insulin levels. Because all of my tests were normal, I thought that nothing measurable was happening in response to my carb intake.

I guess I also didn't pursue the carb thing, because it wasn't the aspect of my illness I was most concerned about - my main concern was that persistent exercise correlated with increasing fatigue and, eventually, (when I wouldn't give up exercise) I started to collapse afterwards (the collapse of my blood pressure - dysautonomia). For years doctors mostly stared at me blankly when I raised the issue - eventually I sat in front of a neurologist and then a cardiologist for whom post-exercise collapse meant dysautonomia, and this was what I was diagnosed with. I thought I'd found the explanation for my illness I'd been looking for over decades.

However, other people in my family also have abnormal fatigue, and one of my cousins was found in her mid-20's to have increasing debilitation with persistent exercise - she was told to stop exercising, and she's gone on to have a reasonably normal life. No-one else in my family, even this cousin, would get a diagnosis of dysautonomia.

I joined the forum mid-2010, and I noticed that other people with dysautonomia had problems with carbs - mostly low blood sugar, and some people had been diagnosed with reactive hypoglycaemia. At the time I was panicked over two teenagers in my family who seemed to be showing signs of my illness, and I had given advice for both of them to lower their carb intake. My doctor and I agreed to a week-long carb challenge to check my carb response, with a glucometer provided by the practice and support from the practice nurse. I honestly thought that I'd be found to have reactive hypoglycaemia, and the young ones in my family could be screened for it, and supported to manage it. BUT I checked my blood sugar hourly each day from waking, and it didn't swing either high or low, even when I felt quite debilitated in the hours after a high carb meal. Unexpectedly, each morning I woke with blood sugar that was higher than the day before. On the morning of day four, I woke with blood sugar in the diabetic range (7.6). My doctor stopped the challenge, and referred me to the specialist for advice.

SO, I'm waiting for my appointment with the metabolic geneticist. I'll post the results if I'm diagnosed with a metabolic condition that is likely to have caused the dysautonomia - it might be helpful to others on the forum. Also, during my consultation with the specialist before Christmas, I was asked questions such as 'do you get muscle weakness that makes it difficult for you to push yourself up out of a chair' - the answer was 'no' for me, but I know that others on the forum have this problem. Screening for rare metabolic disorders might well be useful for others with dysautonomia.

With best wishes

Dianne

[Lovebug]

Coppelia Tarantal,

Hi...I just wanted to let you know that you should start this new med at the lowest dose possible. If it isn't available, check with your pharmacy to see if you can get a liquid form. This is what I had to do with my Celexa and I'm still taking the liquid b/c when I tried to increase my dose, the SE made me feel very strange (like a zombie). My doctor has engrained in my head that I need to start out meds with neonatal/pediatic doses (you sound similar). What has helped my symptoms are water loading (4L/day), Vitamin D, Metoprolol (Low dose), & Celexa (very low dose). I've also found that (so far) I can do nothing about a symptom exacerbation during "that time of month". I hope you feel better soon.

[potsgirl]

Hello! I am also from Tucson and go between Mayo Phoenix and some good cardio people here in town, along with a great internist and gastro doc. Please personal message me and I can give you their names, etc. Also, perhaps we could meet sometime and chat.