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Confused,sick and don't know where to turn


metoo
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Hello,I haven't posted in quite a while.I have checked in from time to time when I felt up to it to read post.I keep you all in my thought. :)

The majority of this post will most likely be a vent so forgive me ahead of time.I really need your all's advice!I'll try to keep it short and to the point.

After years of being sick I went to Mayo last April and was dx with POTS.I started taking beta blockers but do not tolerate a high dose well.It slowed my heart down too much so I am now taking 10 mg 2 x daily.

I have gotten so much sicker in the last year.Nothing seems to helpMy bp and heart rate are dropping very low and I am passing out..My cardio did a second ttt to see what was going on and it was worse than the first one!I am not sure about the bp but my cardio said it dropped'extremely low'.I know my hr dropped to 32 bpm right before I passed out.The last thing I remember was the doctor shouting to the nurses to stop the test then I woke up with my feet in the air!The nurse with me kept saying she had never saw anyone react that way to the test before.I can not walk to my kitchen without becoming extremely sick.Even sitting for more than a few minutes at a time I get really bad.I get hot,sweaty,shaky,nauseaus and feel like I am going to black out.As soon as I lie down it starts to go away.

They have also done a 24 hr heart monitor which showed wild swings in hr.It ran from 43 bpm to 158 bpm.I had a stress test done this week and they say my heart reacts very abnormally to stress but I don't have the full report back yet so I am not sure if there is a blockage but I really don't expect there to be one.

My cardio is considering putting me on Proamitine but he says he is not sure if it is safe for me,what the dose should be or how long for me to take it.He would prefer I travel to Mayo again.Dr Fealey told me if I had any problems he would be happy to do a phone consult with my drs here so I don't see going back right now.I really am not up to making that trip again.

I have lost all faith in my cardio dr.His office actually called me after the ttt and told me that the test was normal other than the fact that I vomited during it and he didn't need to see me again unless I had futher problems.I asked the lady very nicely if she normally vomited when merely standing!She decided that I needed to talk to the RN who told me the test was abnormal and I needed an appt.... :huh:

I am staying hydrated,eating lots of salt,wearing compression hose...everything I have told to do.Am I just having a very bad spell?is there anything else I can do?Thoughts,suggestions,comments,prayers...I am open to all.Please help me.Melanie

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Guest tearose

Hi Melanie! I am sorry that you are in such a rough spell. I do understand and know that dealing with this, along with the home and the children is tough. You really want to focus on life and have doctors you can trust to figure out the medical issues!

I think first thing to do is get on the phone with the cardiologist assertively ask all your tough questions. If this doctor doesn't come through for you, tell him exactly what your are feeling and thinking. Then, have them gather up all your records and tests and find a new cardiologist that you can work with and trust.

Some people just can't tolerate BB's. Were you ever better on the BB? Maybe you are not tolerating the BB. Maybe something has changed in your body. You need a competent doctor(s) to help you figure this out. Do you have a good internist and/or neurologist? You should try doing another look at what is happening and any new testing and then calling out to Minnesota.

When Dr. Fealey and I discussed the pros and cons of medications with my body, he also mentioned that when using medications in some dysautonomic people, they have to be hospitalized while they try them. You may need to try this if you need to introduce new meds or be taken off the BB's. I would just want you to be have total peace and confidence before changing anything!!! You don't want to have to be your own advocate while you are upchucking on the tilt table anymore! You should not have to deal with teaching the doctors forever!

As for what else you can do while you deal with all this...you are doing all I would suggest! It may be a stretch but, are you sure your electrolytes are okay too? That is one more thing I know to watch in my body.

Until you know more, I would hope you can keep a low level of activity so you do not wear yourself out. I think pushing the envelope right now would only make you slide downward. You sound weak and with the possibility of having to do new doctor shopping you need to build your energy reserves!

take care, tearose

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I'm so sorry you're having a rough stretch, Melanie. I wish I had more ideas for you ... all I can suggest is looking at your diet and making sure you eat 5-7 servings of veggies and fruits per day, cutting back on animal products and cutting out trans fats completely. These are not things that help just POTS, but seem to help any chronic illness. Try combining this with daily meditation (even 5 minutes is good).

I am not a fainter and don't have the heart rate lows you mention. I am always high, high, high. So I don't know what else you can do. But I will be pulling for you!

Amy

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Melanie,

Sorry you are having a rough time. I agree with the others that the beta blocker could be lowering both HR and BP and working against you. On the other hand your HR is going to 158 on the beta blocker, so who knows.

If your BP is dropping really low, it sounds like florinef or proamatine (which you talked about with your dr) would be worth a try. I think you can find the recommended starting dosages on ndrf and potsplace.com. It sounds like your cardio is difficult and on top of that doesn't know much about POTS. Is there a POTS specialist doctor in your area that you can see instead of having to go back to Mayo? I would check on the doctor list on potsplace.com. If there isn't one in your area, maybe it would make sense to find another cardiologist, EP, or GP that's more knowledgeable or at least cooperative.

Feel better soon,

Rita

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Hi:

I would seriously consider getting off of the beta-blocker. I too am a person who gets VERY slow readingas and very fast readings....I could not tolerate even a tiny a dose of beta-blocker...I fainted constantly while I was on it....and it didn't even seem to stop the racing heart stuff when it was happening. It just made the slow hr and low bp much worse. My current Dr. (Dr. Grubb) has said that many POTS patients are NOT good candidates for beta-blockers...I am one of them...maybe you too??!!

What I take right now is MagOx 400 which is a mega dose of magnesium to help with the nervous system function, cerefolin, a high-potency folic acid derivitive for brain fog, and provigil to literally keep my heart going. Lately my condition has swung to the super-slow/low category so I need the provigil just to encourage my heart to beat! I still get the fast stuff, but the provigil, at least for me, doesn't seem to make that part of it any worse...it is what it is. Provigil definitely helps me with the extreme fatigue from the ultra low bp and heart rate.

Good luck! There are options out there...I would look beyond the beta blocker...especially since it doesn't seem to be helping you.

kristen

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Melanie, I am sorry for all the difficulties you have encountered in trying to find what will work to help you improve. My own experience is that I found that the beta blocker worked at first, especially since I also needed it to help offset florinef but over time neither med worked for me, particularly making my bp unstable. My bp was dropping dramatically and I felt just like you described.

Also do you have hypovolemia? I have learned that hypovolemia is a real issue to manage day to day (especially without Florinef)....my electrolytes get out of balance very easily, most especially sodium -- even though I salt everything. When this happens I feel terrible but when my fluid tank is full, I have a much better reaction. These are just things to discuss with your doctor. Hope you can find someone more understanding.

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I do all the same things as you. For me Proamatine was the perfect thing to add, mabey consider Florinef, I can't toleraate it, but many who can really get a big boost out of it. If there are concerns over the proamatine, try half a 5mg pill. Sometimes I split one down to take late at night. For me the best dose is 5mgs every 2 to 4 hours depending on my activity. I am having some chest pain now with the proamatine, so I'm considering switching to mestinon (sp?). Still having it out with my doc on pros and cons. Good luck, I was jsut where you are once, so don't let it get you to down, there is hope.

Blackwolf

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'Have you ever tried anti-depressants though? Since panic disorders often mirror POTS symptoms, many people have success with things like paxil'

No offence, but i wouldnt suggest anyone try taking anti-depressants for a condition such as POTS. Most people dont realise that MDMA (ecstacy) and SSRI antidepressants work in almost the same way, by interfering with the normal serotonin uptake in the brain - something that you wouldnt want to mess with unless you were sure you were suffering from a psyciatric, rather than physical illnesses.

get your blood volume checked - that is often a trigger or cause.

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ramakentesh--While both ecstasy and SSRIs are psychoactive, serotonergic drugs they don't really work in the same way. SSRIs are in the class of anti-depressants, whereas ecstasy is in the class of stimulants. Furthermore, I don't think they should be compared, as ecstasy is a dangerous and damaging "recreational" drug with no use in pharmacology.

I am interested to know from what info or studies you formed the opinion that SSRIs are not appropriate for POTS treatment. They have been shown to help many, many people with POTS to see significant symptom improvement. It is true that they don't help everyone, and IMPORTANTLY are at this point possibly not safe or effective for teenagers or children for any purpose.

I'm not trying to criticize your concerns and opinions, but, I don't want new patients, in particular, who may be taking an SSRI, concerned if they read your post, with no mediating response following it.

You are right that low blood volume is probably responsible for many POTS symptoms. But, as we know, POTS is a complex condition. The low blood volume seems to be caused by autonomic dysfunction. For reasons that are not well-understood, some people with this autonomic dysfunction improve with SSRIs. There are, as we know, other ways to address the low blood volume -- increasing salts and fluids, florinef, etc.

Anyway, the bottom line is that POTS treatment is definitely not a one-size-fits-all approach, and there are a variety of safe, effective drugs available that help. One of these are SSRIs.

Katherine

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