Rene S.

I'm on atenolol also. For the first month, I was only able to take 6.25 and than slowly moved up to about 10. and than after about two months was able to tolerate 12.5 which is what I'm still taking. If you do taper down, make sure you let them know this before your cath lab so they are aware of it. Hope it all works out for you. Just takes our bodies longer to tolerate medications that most people can just jump into taking.

Thanks, Tammy. I too take baby doses of everything. I did last night finally decide around 11 to bite the bullet and take the 6.25 mg. (I had been on that dosage in the past with a different cardioligist). This one doesn't get dysautonomia. He says it's something that will pass! Ha! I should direct him to the boards and let him see for himself what really goes on with us.

You sound like you are familiar with caths. Have you had one? Know anything about them? I'm so scared. Especially being allergic to the contrast dye and having to premedicate with prednisone and pepcid. My anxiety has excalated and it's two more days to go. I feel like just running away and not looking back.

No one gets that our bodies are so sensitive to stimuli and medications. Especially male drs!

Rene

Hi. I've been on atenolol 12.5 mg for two weeks. I hate the way it makes me feel, but it's dramatically improved the high b/p. Now the weirdest thing has happened. Saturday was exactly two weeks since I started and my b/p was around 90/47. HR was resting around 72. Last night, I got flushed felt sweaty as can be and I took my b/p and it was 70/40! I got scared, called a friend who suggested salty foods and lots of water. I did get it back up to 90/57 and felt ok just exhausted. I called the idiot cardiologist who said that 12.5 mg could not affect my b/p that way, that it was strictly the dysautonomia! Grrrr.

I usually take the Atenolol at around 6pm. It does relax me, but I've found that in the last two weeks that my depression is worse my eyes are dry and my head burns constantly not to mention the fatigue and lack of energy.

Now here's my query - I know you just can't stop a beta and I'm supposed to have a cardiac cath on Thurs. and they want me on a beta. However, tonight I took my b/p and once again my diastolic number was around 47. Resting. Got up, moved around and ate some salty nuts and brought it back up to 60.

I need to take my dose but was wondering if I should just cut it down to 6.25 and see what happens. I'm terrified of crashing and I'm alone and no one would know.

Still can't figure this out since two weeks ago I was at 196/90 for 12 hours.

Can the heat do this or is this just typical awful dysautonomia?

I dare not call the cardio because he already said that I would do what I want. Would it be ok to take it down 1/4 tonight? Would it lower my b/p too drastically?

Thank you so much!

Rene

Well, it does appear the Tramadol is the culprit. I increased my dose yesterday in the morning and added back in the pm dose, just lower than I had been taking. I woke up somewhat shaky, but not as bad as I had been. I took 50mg and with about an hour, the shakiness began to resolve. Thank God is all I can say........ I didn't know how much more I could take of that torture. I've been reading and some of the reading suggests that coming off this particular drug is worse than coming off Oxycontin or Percocet. I don't understand how this could be, but it is in many articles I have found. I guess having POTS makes it even more difficult, so I will get myself back to a dose that doesn't cause symptoms and wean over the next few months or longer. I'm in no rush as the POTS keeps me on disability.

I know one thing, and this I don't need any more stress in my life than this illness has caused. I guess it's pace not race !

Thanks to everyone for your input and support. It's tough to go through any of this alone. It's ironic because I have a good grip on the neuro Lyme and I don't post much on Lymenet these days and find myself posting here now. This tells me the POTS is affecting my life more than the neuro Lyme.

On top of that, my wife is the most UNSUPPORTIVE person I have ever met and as a result, I will part from her once my house is sold. It's very sad as my kids suffer in the end, but I can't live with someone who vowed to stick it out with me for better or for worse.

I usually have my father take me to my MD appts. as I have seen my wifes attitude in all of this. Well, the one time he was out of town, I asked her to take me down to Hopkins for one of my appointments. I was very weak in my legs at the time and told her I would need a wheelchair to get from the parking garage to the outpatient center. I got in the wheelchair and she walked 30 paces in front of me as if she didn't know me. I was able to wheel myself into the building and I just didn't talk to her during the appointment, but when we got back in the car to leave, I asked her why she acted as she did. She told me she was embarrassed and that I wasn't a quadraplegic, therefor I should have been able to wheel myself. I told her we were at a freaking hospital where many were in wheelchairs and just didn't understand how she could have this attitude towards my illness. This is what I've been living with, and she sleeps on the couch every night and won't talk to me unless she needs something.

I will be much better even if I need to hire a Nannny to help with my kids once I get out of this living situation. For those of you that have spousal support, be glad and know that your spouse really loves you.

Gary

Gary, my heart aches for you. I know all too well the lack of spousal support. I was diagnosed 9 years ago with fibro/cfs (now this lovely dsyautonomia). I was happily married (although I thought!) and once I was diagnosed with the fibro, everything seemed to change. My husband (now ex) became less and less involved with me. Never believed that I was "ill". Resented me and the way my life so drastically changed. 3 year ago, on our 22nd wedding anniversary, he announced he wanted a divorce! broke my heart. We were together since the age of 15. Whatever did happen to better or worse?

My kids are grown but I have no support from anyone. My ex (as of last year) is now remarrying someone he worked with and she's younger. Still you would think he would call once in awhile email, etc to find out how I'm doing? There are days now that are so bad that I don't leave the house. I barely drive anymore and have lost so much weight that I can barely function. Glad my ex can't see me now. he would bolt for the door! Yet if the shoe were on the other foot, I would have stuck by him through thick or thin.

I'm sorry that your wife is treating you so poorly. Those on the board are indeed lucky to have supportive spouses. It's awful doing this alone.

I wish you the best and glad your anxiety is better today. If only I could get mine under control. After 1 week on the Zoloft I just couldn't deal with it anymore. And in the past I was always fine with it. Go figure.

Take care

Rene

It's just been the last few days like this and I've been to the ER twice, yesterday and again today. I went to two different hospitals so they didn't recognize me.

I hate this so much. I feel like a psych patient. The only thing is that my head was actually clear today while all this is going on.

Some have suggested Histadelia or Pyrouria. Does anyone know anything about these conditions. I am eating Xanax and Klonopin like candy and getting very little sedation as if the benzos are just neutralizing the adrenaline and nothing more.

Before, the Benadryl was helping, but today it's not doing squat.

It seems like it's getting worse every day just when I thought it couldn't get any worse.

My folks try and talk me down on the phone, but there is no talking me down as it feels like my heart is going to jump out of my chest.

I can handle brain fog, confusion, 3rd personing, even though these arn't pleasant, but Pure adreanaline that turns into panic is just terrible and I just can't believe how long it all lasts. I'd give the discomfort at 20 out of 10, thats how bad it's getting.

I've got 1mg of Xanax and 50mg of Benadryl on board and still have a lump in my throat, and the anxiety is down a bit, but not enough that I'm gonna move from this chair.

Can anyone here relate ?

/quote]

Gary, you could be me! Lately, I don't know what to do with myself with this anxiety. I saw a psych last week who told me to keep upping the klonopin. It doesn't do anything but intensify the anxiety! I pace back and forth and have the horrid chest pains. They've been so bad that I'm going in at the end of the week for a cardio cath since the last time I was in the ER my cardiac enzymes were slightly elevated. The cardio there said I could have had a coronary spasm or cellular damage. That was the night that I couldn't get my b/p under 190/90 and heart rate at rest was in the 90's. Everything sets off my anxiety. Talking on the phone, hearing the phone ring. I've done the same as you - gone to two different ERs. Even when I saw the cardio this week he said you are filled with anxiety. I've never been this way. Even when I took zoloft in the past it worked this time it has the opposite effect. It's revving me up like I've had ten cups of coffee and I don't drink anything with caffeine! After 6 days I've taken myself off of the zoloft. The klonopin is useless. And I can't take benadryl since it does the opposite - wires me! I also do not get the sedation from the Klonopin and I take 1/2 mg three times a day. It's useless. I sit here and shake!

I'm so sorry that you are going through this. It's awful. I'd rather endure pure physical pain than this.

Sorry I don't know about the two conditions that you have mentioned. I pray we both get relief from this. I do find that occasionally by 5pm I've calmed down (maybe it's the atenolol) and I can get a few hrs of relief.

Stay in touch and let us know how you are doing.

Rene

Thank you both so much. I'm trying not to take any tylenol (can't to aleve, motrin, advil, etc. due to stomach upset).

I was also diagnosed with anemia and wonder if the headaches have anything to do with that?

Rene

Hi. The headaches started before either med was introduced. That's the frustrating part. You're right. The drs should have spaced it further apart. I've been checking b/p and it seems ok.

It's almost like a fire in my head if that makes any sense.

Thank you both for the suggestions!

Rene

Hi Rene,

I am sorry to hear about your headaches. I also suffer from daily headaches. I agree that what you described sounds like a tension headache. Did it seem to start in relation to any of your medication changes though? Both the Zoloft and Atenolol can cause headaches as a side effect. You mentioned that Tylenol didn't help. Have you tried Advil? Otherwise, this is what helps me. It is kind of strange, but I put Icy Hot patches on my temples and head. If the pain seems to be coming from tension in your neck and shoulders, BenGay might be worth a try. What about a cool or warm compress on your head while laying down?

Take care. I hope that you can find something that lessens your pain.

~ Broken_Shell

Hi Michelle,

Thanks for responding - you always do! Not sure what is causing it but you are right, probably tension perhaps aggravated by the atenolol which I started on Sat. I started the zoloft today so that's not a factor = yet! Never considered icy hot patches but perhaps a heating pad? I know my shoulders are all tensed up so that could be playing a part. I can't do Advil. Eats my stomach. I will try this natural rub that I have tonight and see if it helps. My cats will just love the way I smell! LOL. Thank you for all of your suggestions. I'll respond to your PM as soon as I get a chance and get some relief from my head.

You are so sweet. Hope you are doing well.

Hugs

Rene

Hi,

Sorry you are having a ongoing headache! It sounds like what is called a tension headache due to your description of it is like wearing a hat that is too tight. There are many possible causes to tension headaches. Try and google tension headaches and see what you find that may fit. It might be stress, posture changes, allergies, hormones, meds etc... If it keeps up make sure to talk with a dr about it, so they are aware and can help you determine the best treatment.

It shouldn't of course be the med you just started. Did you just start or stop one around the time the headaches started?

Hope you get relief soon!!!

Hi. I thought the headaches may have been a result of my pressure being high at times. But there's no rhyme or reason. It may be from sitting at the computer and the way I hold my self up. Tension would be it but I was under more stress before so I don't know why it's manifesting itself now. No, it can't be the meds. I wasn't on anything prior to this week. Hmm, I just wonder if the atenolol is a contributing factor.

Thanks!

Rene

Hi Rene,

Sorry that you're suffering from bad headaches. I can really relate to that. I also take Paxil, and have for years, but have never been able to get past a dosage of 15 mg. I used to take 10, but with this illness and new stressors, {including having to quite work, finances, etc, etc) I had to move it up to 15 mg. I have a hard time tolerating medications, and usually have to start at a very low dose and build myself up. Perhaps you need to start on a lower dose of Paxil?

I know starting new drugs (Atenolol?) can certainly create some pretty horrible headaches/migraines. Mine also started out of the blue, and I have migraines almost daily. I take Darvocet, and my neurologist tried to start me on Topamax, which you take daily to PREVENT migraines, but I couldn't tolerate it.

I hope you figure this out soon. I know several of us do take painkillers to deal with headaches/migraines. Here's hoping you find some relief, soon!

Cheers,

Jana

Thanks, Jana. I only started the atenolol this week but it may be a contributing factor. My cardiologist has "dismissed" me because I called him on the floor about having POTs and h/p and he said that's impossible. So, for now, I'm stuck with the atenolol. Just started the zoloft today so it can't be from that. I'm sorry that you suffer as well. And yes, I'm starting on a baby dose of zoloft and it's already making me feel horrid. Just don't know why we can't do meds!

Take care!

Rene

My daughter has been on it for over a year. The only advise I have is eat in the AM then take it. The idea being take it early so it effects your sleep less.

good luck

Thank you, Pat. I know in the beginning it really messed with my sleep. And I'm trying to add more calories because I know it will cause weight loss and I can't afford that!

Best,

Rene

Hi. Well, I took the plunge. Decided to see if Zoloft would help any of my symptoms. I'd been on it in the past. The first two weeks were always so awful. Now taking it for the first time since my diagnosis. Don't know what to expect. Only on 12.5 but I'm so sensitive to everything.

I'd love to hear about your experiences, good or bad. I know the one unfortunate thing is that it will decrease my appetite, something I can't afford to have happen.

How was the adjustment period for those of you on it? I know many people do just fine, but for me, it's the awful speeding sensation that really bothers me. I do take klonopin and have script for ativan which the psychiatrist says I can also take, but I don't want all of those benzos in my body.

Just looking for a little moral support. Not easy doing this alone.

Thank you all so much for being here for me!

Rene

Hi. I know that headaches are a big part of this illness, but I can't get mine to stop pounding. Prior to a month and 1/2 ago, I never had them. Now, I feel it in my eyes, the base of my skull, the top and throughout my face. If I even lay on it, I feel this intense burning sensation. It's as if I'm wearing a hat this is way too tight. Does that make any sense?

I can't figure out the trigger. Tylenol doesn't do anything. Could this be stress or migraines? I just started today on Zoloft 12.5 mg. I'm a bit scared. I was on it before prior to my diagnosis and hated the initial two week start up period.

Does anyone have any suggestions as to why the headaches are constant? I know I was having b/p issues, but now am on Atenolol. Wondering if that's making my headache worse.

Any advice would be greatly appreciated.

Thanks!

Rene

Sorry to read that you are having such problems with meds. I also have POTS and have had such problems with meds. Dr.s tried so many I litterally was so sick I ended up in the er twice. To make a long story short I found at the University of Louisville School of Medicine they do a pharmacogenetic testing. In simple terms how your body reacts to meds. After getting the test done I found out I had a liver enzyme problem and any drug that goes through that enzyme I can't take, which includes all beta blockers and ssri. If you want more info the web site is www.pgxlab.com. The doctor that helped though this gave me her personal phone number there at the university and I can call her any time to see if I can take any new med a dr prescribes. Hope this helps.

Maggie

Thank you, Maggie for the info. I've always had a problem with meds and the drs look at me like I'm nuts. Even with some of the smallest doses, I have reactions.

I wonder if they do this testing anywhere else besides Louisville? I'm in PA.

I wil definitely check out the website.

Thank you again.

Rene

mestinon and labetalol plus zoloft - my basic regimen; add a little procrit from time to time...

that's what seems to make the most difference.

Thank you. I was told to try and stick it out with the atenolol. I wanted to switch to Zebeta (bisoprolol) but my cardio (former now!) said he doesn't think it's been on the market long enough. I think I will start back on the zoloft tomorrow.

I guess I'll prove my cardio right that I'm just a neurotic woman!

Does anyone see a female cardio???????????

Rene

I hope you get answers soon. I know it is scary and frustrating.

A combination of beta blocker and SSRI is a common medical treatment for POTS. I've never heard that the two interact. I was on both for years and my sister still is.

Thanks. Originally, it was thought that I had a pheo but the tests were negative. Now I have this nagging feeling that's still where I should be looking.

Pindolol is fine with an a/d. There are some that are contraindicated.

Yes, I am scared and frustrated and still awaiting a call from the cardio. I had to to my atenolol because my b/p was shooting up as well as my anxiety. There is no justice!

I just hope that Idon't have a heart blockage because I don't think you can take atenolol or any other betas if you do. I could be wrong.

I wonder if I should post about anyone having a cardio cath but that's not sticking with the subject of disautonomia.

Thanks again.

Rene

Troponin - released when heart muscle is damaged or broken down (so a tiny amount is normal for everyone), goes up loads during a heart attack, can be always slightly high in people with chronic kidney disease.

Troponin peaks at 12 hours after "the event" but takes a couple of days to go back to normal. How soon after going to the ER was the first troponin done and how long before the repeat was taken?

The D-Dimer test is very sensitive for detecting blood clots (DVT or PE) but it is not at all specific - basically it always goes up with blood clots but it can go up for many other reasons. A common cold or virus will give you an elevated d-dimer.

V/Q scan (pulmonary ventilation-perfusion scan) is a test for PE.

Basically you have a raised blood test that could be from a clot but could also be from many other things, your tests for clots in both legs and lungs were negative.

There are several tests for coronary heart disease - excercise ECG, stress echo, angiogram, stress perfusion scan. If you want to have more test for heart disease I would advise talking to one or more cardiologists about the different tests possible - don't just go with an angiogram because it is the most common one.

Beta-blockers and anti-depressants - I took a combination of Bisoprolol and Paroxetine for several years with no problems, no doctor or pharmacist mentioned any interactions (best to speak to a pharmacist, they are experts at medication interactions).

Flop

Hi Flop,

The first troponin was taken in the ambulance. It elevated, and now I wonder if it's because of the way it was stored because my d-dimer was also taken from the vials of blood drawn in the ambulance.

They repeated the troponin twice afterwards both normal. I believe the 2nd was repeated approx 6-8 hrs after the first, and then another 6-8 hours after the 2nd. I did have the v-q scan done - negative as well as a doppler of the leg that's been bothering me. I have had every heart test done, all that you mentioned including a calcium score test which was zero. I don't want to undergo an unnecessary procedure and especially one as risky as a cardiac cath. Unfortunately, I went to a hospital where my cardio wasn't attending. This test is scheduled for friday and now am waiting for the cardio to call me back. I won't hold my breath.

You are fine with the zebeta and an antidepressant. They don't interfer. It's ones like metoprolol and some others that do. I want to switch to zebeta since I've heard it has less side effects than the atenolol.

Right now I'm just totally frustrated and don't know what I should do. I guess I have to wait it out till I speak to the cardio and perhaps call another for a second opinion.

Thanks again.

Rene

LOL, I'm in Southampton. I'm sorry to say I have no time. I drive 1 hour and 10 minutes, 5days a week to get my daughter to her school. I work 7days a week and take her to many appts. As if that's not enough I'm selling the house, moving.

I'll be at the Southampton Applebee's (working)Tues and Weds, the slow time is 2PM. I'm a host, and can chat. Let me know tho since sometimes I leave at 2.

OMG, that's too amazing! How in the world do you have all that energy to do what you do??? I'm 5 mins from the Applebee's. I live in Huntingdon brook. Just moved myself.

PM me if you want and we can talk by phone.

Pat, have you found any local drs that are good? It's so hard for me to drive!

Rene

Hi. I was wondering if there was anyone in the Bucks County, PA area on the boards. I'm in Southampton and don't have an easy time getting around. I'm only 6 months diagnosed with Dysautonomia and don't have a clue as to where to begin. I'm barely driving anymore due to high h/r and dizziness.

Was wondering if there were any groups nearby or anyone in the general vicinity. I live alone and this is so hard on me.

Thank you!

Rene

I don't know who to turn to. And the ER is getting old. I wish I had one dr. who knew what he/she was doing. I'm getting more and more frustrated with each passing day.

Rene,

As much as you might hate it, go to one of the University Hosptials! You have U Penn, Temple, Thomas Jefferson.......

Get a clinical endocrinologist to dig for you! Thomas Jefferson has a fantastic headache clinic! Worry will drive your BP up and you do not need to mess with this!!!!!!!!!!!!!!

Drive the 45 minutes and go! Take the train if you can't drive! Call and ask which of the endos likes to see "difficult cases." Anxiety doesn't mess up lab results! That is straight from my psychiatrist!

Take care!

Jennifer

Thanks, Jennifer

I was thinking of calling Jeff in the morning. I was there once and saw an EP guy prior to my diagnosis. This was when I had the non sustained v-tach and was on metoprolol. I just don't know what the heck is going on with me. I won't be able to drive and will have to rely on someone. And to think I used to drive an hour each way to work! Geez what my life has become. I just want to be admitted and have every available test done!

How is it that you are so familiar with the hospitals around here????? And now that I've started the atenolol I wonder if that would skew the tests???? Not that it's doing anything yet for my b/p.

Thanks!

Rene

Rene, have you tried Propranolol (Inderal)? It is one of the older Betas. Do you have a firm Dx of H-POTS? You might need something more like Clonidine (?) instead which is an Alpha blocker. Have you been checked for a Pheochromacytoma (adrenal tumor?) It sure seems like you've got something going on that is not just POTS. Are you retaining water? Lots of questions, sorry no answers. Keep us posted and take care of yourself!

Jennifer

Hi Jennifer,

I knew I could count on you! No never tried Inderal. I don't have a firm diagnosis of H-POTS but my b/p is constantly elevated where before it wasn't. And I've just turned in the urine test for the pheo. This is the second time. I have all the symptoms but my endo is 100% convinced that it's not. He wants to chalk all of this up to anxiety but there has to be something else. Not retaining any water. I don't know who to turn to. And the ER is getting old. I wish I had one dr. who knew what he/she was doing. I'm getting more and more frustrated with each passing day.

I'll keep you posted.

Thanks, Jennifer!

Rene

I'm in a quandry. For the last few weeks by b/p has been high along with a high h/r. I've been avoiding beta blockers since they tend to make me depressed and lethargic. However, I was rushed to the hospital on Weds night due to b/p reading of 190/90 and horrid headaches and chest pains.

Two unfortunate things occured. #1, my first Troponin I was elevated (0.12) the next two were in normal range. Also, my D-dimer was elevated (0.65). I had both a doppler of my legs (my right calf has been hurting and still is!) and a V-Q scan. Both negative.

Now, back to the Betas - They started me on Coreg 1/2 of the smallest dose 3.125 I believe. After the second dose, I started getting the worst heart palps. Was dizzy, disoriented and extremely anxious. They still dismissed me.

I spoke with the on call cardio, yesterday and he told me to switch to Atenolol which I have previously taken. 12.5mg. Freezing hands and feet, feeling depressed and out of it. I have tried metoprolol, coregard, and pindolol in the past, each with it's own set of side effects.

I want to start back on an antidepressant and I know that some of the betas interfer with the a/ds.

Does anyone have any advice? I'm just stumped and worried. Even though my troponin level was high just the first time, the oncall cardio in the hospital thought I needed a cath, thinking I could have some cell damage (I get chest pains alot and palps). I'm deathly allergic to contrast dye and afraid that the prep alone won't help and there are risks to the procedure itself.

Also, I'm scared about the D-dimer being elevated especially since I still have the calf pain. I don't have faith in any one dr and they all seem to blow me off.

Sorry for the ramble, I'm just scared and frustrated and now all my friends basically think it's all just in my head.

Speaking of which, I have had an ongoing headache for over 3 weeks now. When I mentioned it in the hospital they gave me regular strength tylenol and even though I'm still losing weight not one dr there was willing to do any testings to get to the root.

I'm just so frustrated with this illness.

Please advice.

Thank you so much.

Rene

Bev wants me to start on Coreg. My tests showed that I am not hyperadrenergic; however, she thinks this is the best beta (and alpha) blocker for me to start with. I have heard some negative things and am very hesitant to try this. I generally feel ok unless I exert myself too much or get too hot - bending over for too long and occasional chest pain and palps are also a problem - although all these symptoms are independent of each other. I know Bev/Grubb are experts, but I do not have a good feeling about this - and have learned to trust my instincts more thans doctors.....

Hi. I know this is a late posting but came across your message. I can only say that I've had two pills and they gave me the worst palpitations. And it was a baby dose. 1/2 of the 3.125 mg pill. currently trying atenolol for the 2nd time. Betas don't make me happy.

Rene

I've been having palpitations since 5:00 am this morning. I woke up with them. They haven't let up at all. It feels like my heart is jumping up in my throat at times. Other times, I feel skipped beats. My husband felt of my pulse for a while and couldn't believe it felt like that. I'm having more irregular beats than regular. I went to the ER last month for fainting twice and having severe weakness on the right side of my body. After countless tests, the doc just told me that it's because of the orthostatic intolerance. My husband had to help me back out to the car because I couldn't walk. I've had these episodes in the past, but this seems so much worse. My cardio told me before that I could double up on Coreg if I have an episode. I've taken two extra pills today. I've tried bearing down to stop this, and I even put my head in a large bowl of ice water because a family member said it would "shock" my system. Yes, I'm that desperate! Nothing is working. Does anyone have any suggestions?? When do you decide to risk another disappointing, expensive trip to the ER?? Any advice or suggestions are greatly appreciated.

Hi. I know this a late after your post, but I just wanted to add that your palps may be due to the Coreg! I was taking a tiny dose 3.125 (1/2 pill) and only twice and had the worst palps! They would not stop.

So, please look into that aspect. Not all meds effect everyone the same.

Rene

i'm too tired to write a more thorough or thoughtful post at the moment (sorry ) but did at least want to let you know - as someone who has been in the "dysautonomia world" so to speak for almost 12 yrs now (as a patient as well as in other assorted ways). as such i can assure you with 200% certainty that all of the signs & symptoms you are experiencing are not at ALL uncommon within a diagnosis of dysautonomia. i of course cannot guarantee that nothing else is going on in your specific case, but having read all of your posts on the forum thus far there you have not mentioned anything that falls outside what can easily be "just" dysautonomia. while i know that low bp can at times overtake more discussions, i can assure you that a significant number of others here on the forum deal with intermittent high blood pressure.

additionally it is not particularly far-fetched for your doctor to suggest that your readings may be RELATED to your anxiety; note that i did not say that anxiety is the sole cause of your symptoms, and it doesn't sound that your doctor is alleging that either. but your anxiety re: your BP/ HR readings may very well be yet another aggravating factor, which - in combination with other triggers such as running up & down the stairs, standing up, etc - could easily result in the numbers you're reporting b/c in those with dysautonomia the underlying control mechanism for controlling the BP & HR isn't quite what it should be; in other words it's not the same as it would be to suggest the same thing (i.e. that the BP/ HR fluctuations are related to anxiety) to someone without dysautonomia. so while i realize that it's easier said than done, the very numbers that you're so anxious about might very well improve somewhat if you could somehow remove - or at least reduce - the extent/ degree to which you are anxious; sort of a catch-22 but a likely reality all the same.

by no means should you resign yourself at this early point in your dysautonomia-journey to not improving and should certainly do whatever you can (within reason) to work towards improved health; this could mean different medication(s), lifestyle change(s), a new physician &/or some combination of these things &/or something else.

i'll try to get back & reply more personally & thoughtfully when i'm not falling asleep as i type. for now i hope some of the above info helps at least a bit.

cheers,

melissa

Thanks, Melissa. Yes, I am plagued with anxiety. I've always had it, but not to this extent. I think the illness only makes it worse. It's a vicious cycle. I'm alone and scared and you would think that a woman of 50 would be able to pull herself together and get over it! I hate not being normal. I hate being told by drs that it's due to menopause and anxiety disorder. I'm tired of the ups and downs (lately more ups of high b/p and h/r). I want this to be over. I'm sure you do as well. Sorry, it's pity party time for me!

HOw do you get to a point where you realize that this is normal for you? How do you accept it and live with it? I just want to wake up and have it over with! Maybe because it's all so new to me and all of the stressors that I dealt with in the past.

I want my heart to be strong, but how can it when I can't even exercise except for climbing the steps about 20 times a day and then struggling to catch my breath?

Sorry for the rant. I just needed to vent.

Thanks Melissa!

Rene

I'm so sorry for what you are going through. I know the feeling. People are starting to think I'm anorexic. yeah, right, I want to look like a bag of bones! And I give you credit for driving. I even think about when I have to and I get majorly stressed out. I hate this illness. I have had two Ensure drinks today (they now make one for weight gain!) and have stuffed nuts and dumplings down my throat.

I'm sorry that your mother upset you. I had my daughter do the same to me the other day.

Seems like anxiety/stress goes hand in hand with our illness. I can't deal with my constant fluctuations of b/p. But mine goes high. I can't even walk anymore or sit up straight without it skyrocketing. I only get relief while lying down and that's no way to live. I want this fixed and I want it fixed now. I'm sure you feel the same.

It was so nice of you to attempt to go and get your girlfriend a gift. And don't take it out to much on your mom. It's hard watching someone you love suffer when you can't help them.

Good luck

Rene