New Here To The Boards

[Rene S.]

Hi. I had my official diagnosis of dysautonomia on 2/9/08 after having the tilt table test done using nitrogylcerin. I did the part ok without it, felt sick, dizzy but still was functional. 5 mins after the nitro, I crashed. B/P went to 40 and heart rate went to 130 passed totally out. Never felt so sick.

Just a bit of background on myself:

I'm 49, divorced, 2 adult daughters. Diagnosed with fibro/cfs 8 years ago. Did well on zoloft and klonopin for all of those years. Experimented with Lyrica (hated it), Neurontin, and Skelaxin. I also went through early Meno and was on bhrt from the ages of 44-49. I had switched antidepressants to lexapro, helped with anxiety, not so much with depression. Well, my world crumbled at the end of October. I was wearing a cardioNet event monitor when it picked up one incident of non sustained ventricular tachycardia for 9 beats. I was sleeping and totally unaware. Right then and there, they threw me off the hormones and antidepressant and tried various beta blockers, which led to more depression. Crashed big time. Had tons of heart test including MRI and everything was structurely ok, but I was falling apart both mentally and physically.

At the time my divorce was being finalized and I was in the process of moving and grieving. My b/p was always 90/60, heart rate 60-65.

After all of this, my heart start racing whenever I stood up. The next cardionet showed basically all tachycardia. My anxiety level has doubled and I'm totally depressed.

Started back on the Lexapro with my new cardio's permission but this time I couldn't handle it. Major palps. So, figured try the Zoloft and once again the same thing happened.

Here are my symptoms:

Depression/Anxiety

Rapid heart rate (just standing goes to 115 or higher)

When lying in bed, b/p is normal, but sometimes when I'm anxious or even standing I get high b/p 150/80 or higher and when this in combination with the high rate, I get hard strong palps that seem to go on forever.

My appetite is in the toilet. I've lost about 14 lbs in 3 months and I only weigh 90lbs now. I'm nauseated all the time, no appetite and now my gerd and IBS is back.

My life as I knew it is over. I've become afraid of driving, won't leave the house (horrible anxiety) and this is totally out of character for me.

I get dizzy, I shake all the time, both internally and externally and go from freezing cold in the day to night sweats. I also notice that when standing, my legs seem to change colors (reddish) and if I touch them you can actually see where my finger prints are.

Horrible chest pains which have landed me in the ER numerous times - everything checks out ok. They look at me like I'm nuts when I say I have dysautonomia.

Exercise intolerance. I used to be able to walk 3 times a week even with the fibro/cfs, now I climbing the steps is my only form of exercise. I also get short of breath easily.

I am seeing a therapist and just started seeing a psychiatrist who wants me to start Paxil. I'm scared to death to take it. One of the side effects says tachycardia!

I do take .5mg of klonopin 3 times a day. My cardio wants me to eventually start Pindolol (beta blocker) 2.5 mg daily. For now he wants me to increase sodium, but my pressure is never really that low.

I have gotten myself stuck. Does anyone else take Paxil or Pindolol?

I'm so sorry for this long rant. I'm at my wits end. I'd love any suggestions, imput or similiar stories.

Thank you for taking the time out to listen. It means so much to me.

Ruekat

[Ernie]

Hi,

Welcome aboard.

I have tried Paxil but it made me much worst. I had to stop after a few days.

Have you tries compression hose or Proamatine?

[Guest brianala]

Hi Ruekat

Welcome to the boards, but sorry you have to be here! I had a big health crash after my divorce, too. Back then I had no idea what was really wrong with me though, so the doctors chalked it all up to stress and anxiety and stuck me on Effexor. While it helped in some ways, the withdrawal and side effects were more than I was willing to deal with.

I just switched off my beta blocker because it was giving me major issues with fatigue, depression, and weight gain. My doc has me on midodrine now and while I've only been on it a couple of days, I'm optimistically keeping my fingers crossed. So far I feel great on it.

Just keep working with your doctors to find something that works for you.

[potsgirl]

Good morning~

I am currently on 15 mg of Paxil, and it has been working for me for about 10 years. I can't get up to 20 mg because my BP crashes. I did try to switch to Prozac, but it made me sick. I think it's really an individual thing that you have to keep trying the meds until you find the right one for you. And remember, we can be really sensitive to new meds, so I'd start with a low dose and gradually move up. Hope this helps!

potsgirl

[Broken_Shell]

Hi Ruekat,

Welcome to the DINET forum. I hope that you will find helpful advice and support here. I don't have experiences with either of the medications you are asking about. Have you seen an "autonomic specialist"? I ask because many doctors are not familiar with dysautonomia, so someone with experience treating patients with our condition may be in a better place to recommend medications to treat your symptoms. Good luck as you begin your journey here, and remember to listen to your body and take it one day at a time!

~ Broken_Shell

[Rene S.]

Ernie, May I ask what is Proamatine? Sorry I'm trying to learn by reading everyone's posts.

Brianala, Thank you. I'm so sorry that you had to go through a divorce as well. And I too experienced depression from the betas even on a small dose. I'm so sensitive to meds! May I ask how you deal with the anxiety/depression? For me, it's overwhelming and paralizing and I don't know how to move on.

Potsgirl, Does the Paxil increase your tachycardia? I'm just scared of the starter effects as I've experienced awful ones on both Lexapro and Zoloft. And yes, I know to go slow on the dose! I'm supposed to start at 5, but knowing me, it will be more like 2.5. Do you remember the dose you started with and did it increase the anxiety?

Broken Shell, Thank you for your warm welcome. My cardio seems to know someone about Dysautonomia. We'll see.

Now, about the palpitations anyone know why they are worse when my heart rate is higher or b/p is elevated? It's all so confusing.

Thank you for allowing me to be a part of your community.

Best,

Ruekat

[potsgirl]

Ruekat,

I think I started at 2.5 mg, and then slowly worked my way up to 10 mg. I've only recently had to increase the Paxil to 15 mg to help with my sleep loss/anxiety. It doesn't give me tachycardia at all, in fact it calms me down (although 20 mg of Paxil brings down my BP). I also take .25 of Klonopin, which also helps me sleep. I hope this helps. Let me know how it goes, and good luck!

potsgirl

[janiedelite]

Hi Ruekat,

Proamatine is also Midodrine which helps constrict your peripheral blood vessels, helping with orthostatic intolerance (OI). Once in a while my standing BP will be low, but mostly the longer I'm upright the higher my BP will go and my heart does pound in my chest like you describe. I've also had the increasing anxiety like you describe, and I've never been diagnosed as clinically anxious or depressed or anything. I've always been fearless, but since my OI has worsened driving stresses me out. It's like I just get so stressed trying to focus on all of the traffic, acceleration, directions, etc. and my heart is pounding and chest hurts which becomes so distracting, worsening the cycle. My BP goes very high during this also.

I have tremors which become more pronounced the longer I'm upright. My extremities get very cold during the day and sometimes my feet even get pale/bluish and I get lesions which have been biopsied as being chronic frostbite. I have intermittent episodes of night sweats, and can feel really hot at night. I have chronic nausea and during a small bowel motility study I found out it is very slow. Activity makes my symptoms worse.

I recently posted about my trip to Mayo last month which will tell more about my symptoms and test results. But it's common for people with POTS to have elevated catecholamines (specifically norepinephrine) while upright which causes the "fight or flight" response. My levels are very high, and the doc said that explains my slow intestines, tremor, anxiety, cold extremities, high BP, etc. So for me, treating my venous pooling helps lower the fight or flight response and reduce the high BP, nausea, etc.

POTS has certainly been life-altering for me, and has slowly gotten worse over the last few years. I'm 35 now, and rarely went to the doctor prior to the last couple years. POTS symptoms are very scary, and being fully evaluated by an autonomic specialist was comforting to me because he sees patients like me all the time!

I agree that you might benefit from seeing an autonomic specialist. Compression hose are an easy and fairly cheap treatment, too! I wear mine every day!

I'm sorry you've gone through so much personal crisis lately. Combined with your physical deterioration, I can understand why you feel so helpless! I think you are on the right path toward getting answers. For most people with dysautonomia, the illness is life-altering but not degenerative. Each patient is different and you've already started the trial-and-error of trying to find the right combination of treatment. Sounds like you're doing a good job being your own advocate. Are you still working? Do you have anyone who can help you on days you feel really badly? Take care and keep searching!

[Rene S.]

Sorry about that Fearless. I didn't mean to duplicate your reply. We share many of the same symptoms. I'm so sorry that you have to go through this nightmare as well. I thank you for explaining about the med and also your experience with the rapid heart beats leading to chest pains. Whenever I drive (and maybe that's why now I have a phobia), I get all tensed up and the palps are non stop. As soon as I'm home and safe they dissapate. I have been tested twice, including an CAT scan for a pheocromcytoma and it was negative. I'm supposed to get my morning cortisol levels checked but haven't been up to it. I'm tired of being nauseated and not being able to eat. I have to force food down my throat.

Potsgirl Thank you for your reassurance about the Paxil. I'm starting at a baby dose if I get up enough nerve to take it tomorrow. 2.5 even though the psychiatrist said start at 5mg for 4 days then double it to 10. Not with my system! Do you get any palpitations or anxiety with the Paxil or did you when you first started? Have you ever tried to wean yourself off? The internet can be a scary place filled with horrible experiences. I often wonder how real the postings are.

I wish you both well and keep your fingers crossed for me. I only fear that by taking the Paxil, I'll give myself a heart attack from just the fear alone.

Have a good night.

Rene

[Rene S.]

Thankful, you could be me! I always thought my pressure should just keep dropping when standing, but lately it's been shooting up! Grrr. I'm tired of this. And I started a low dose of generic Paxil which isn't making matters better. It's causing even more anxiety. I'm tired of having no interest in food and as for driving, I haven't driven in a week since i had such a bad experience where my heart was racing so that the palps came and I thought I was going to pass out.

This is no way to live.

I see the EP cardio on Tues (providing I can find a ride and maybe then I'll decide to start the small amt of Pindolol that he recommended.

Thank you.

Rene

[jump]

Just wanted to say quickly, that I also tend to have HIGH bp upon standing with tachycardia. Not always but usually. I don't have high bp when sitting/lying down. I was wary of adding salt to my diet, because I didn't want to make my standing bp worse, but I actually found that adding salt and fluids made my standing bp and hr MORE normal. When I only added fluids it didn't work as well. I'm not sure why the salt doesn't make my bp higher, but it doesn't. So, if your doc is recommending it, you might want to give it a try and just take it slowly and monitor things.

hope you find some help for your symptoms, and welcome to the board.