Bp Really, Really Low----67/36

[Guest Julia59]

Hi folks---I hope you are all having some good days.

Saturday I took my blood pressure about an hour or so after getting up in the morning. It was 67/36----the bottom number is what I found to be a bit surprising. The lowest number I had before was 66/44.

I never really thought of the blood pooling issues, I just thought I wasn't one of the blood pooling people. Then I started to watch things---I noticed purple legs in the shower. I also think my blood pools in my abdomin considerably after eating-----I usually get pretty symptomatic. I can only eat small amounts at a time. After finally having a confirmed EDS diagnosis, some of this made more sense.

Anyway I have noticed my BP readings have been consistanty low -----much lower then it used to be. I'm finding it almost hard to believe myself. We checked the BP machine by checking my husbands readings. His always reads borderline---around 130/90-----sometimes lower, but usually never below 115/70.

I have also noticed my HR has not gone up a great deal to compensate for the low BP. When I get spells of tachycardia---I'll get it whenever---standing, sitting, laying---it's doesn't sem to matter. What usually happens, is that I'll find an irregulat HR after walking around for more then a few minutes. This does not always happen, only when I'm more symptomatic, or when I push myself too far. The other day Ron and I were able to go to a couple of the smaller stores in the mall and browse, and I didn't get horribly wiped out, so that was really nice. And the bast part is that this was after going out to eat---

He took me out for a late birthday dinner, because my B-day fell on mothers day we didn't have a chance to go out. I was so happy I could actually enjoy our time out. I was very careful, and ate very slowly, and saved some of my meal for later. We went to my favorite Italian restaurant. This was actually on the day my BP was really low in the morning. I had a little nausea that day---very light---more queasy. I was worried I wouldn't be able to eat, but it all worked out. I was surprised with such low BP in the mornging that I was able to go out that evening. Yesterday was a different story however.

Anyway, I have had a lot of concerns---and the low BP without my heart rate not compensating is kind of worring me a bit. I brought this up on my last appointment with Dr. Grubb, but it never really got addressed. I'm wondering why there doesn't seem to be any concern about this. I had a whole diary of about three months worth of really low BP readings with me on my appointment. I have all kinds of other ANS issues, along with some CNS issues, but I just feel like I'm not getting anywhere.

This has left me in a pretty depressed state, and I'm not sure where to turn. I am going to bring this up to my therapist Wednesday when I see him. I just feel that I'm not being taken seriously----maybe because I put on a good front---I appear healthy----"well nourished". don't they notice that I either have to lean back---or lean forward, as I am not really able to support myself well when I sit up. I have such an unstable back. and neck--------I just don't have good support to sit for long periods without changing my positon many times, or a need to lay down FLAT, with my head slightly elevated. I can't lay my head completely level with my body------it's too much pressure and pain.

I'm wondering if I should go to a good ANS clinic in addition to my appointments with Dr. Grubb. My fear is that they wouldn't see me because of a negative TTT. I'm on meds---I have been since 1990---beta blockers, so it took longer for the HR increase, and the BP at that time only dropped 20 points. The last time I took the TTT in 2004---I felt dizzy when they tilted me up, but I still passed the test. Needless to say I still have POTS.

My husband and I have concerns financially about traveling. We also need to go to NY to see the neurologist--(Dr. Kula) who works with Dr. Bolognese at The Chiari Institute. The neurologists in Toledo don't seem to take this kind of stuff seriously----even though I have my odontoid bone-(C1--or C2---can't remember) pressing on my brainstem---and combined with cervical/cranial instabiltiy---it's just not good).

I'm afraid to wait too long---as anything near the brain stem can be potentially life threatning.

I had some dental work done last week that was pretty dramatic. My right back molar was crowned in 2001 due to the tooth next to it be extracted---so I needed a bridge. Anyway there was decay under the crown---and it was way into the meat/nerves ext. Then I had two other teeth filled. It doesn't seem to matter how well I take care of my teeth---I still get decay. However, my gums are doing great--- I found I was really symptomatic after the dental work---and I still am pretty bad. I also found that the mastoiditis has never been addressed that was found on my brain MRI. Maybe it's nothing, but it was never addressed at all---and I think it should have been considering all the instability issues I have, along with the constand feeling of ear fullness.

I'm sorry to rant on---but I feel disposable-----I don't feel like this myself---I just feel that is how the docs think of me-------nothing really to worry about------just treat and street me----but I'm not really being treated---not fully anyway.

Julie :0)

[persephone]

Hi Julie,

Sorry you're feeling sucky.

I've had low blood pressure like yours- I had it last week in the hospital- and my diastolic 2was down in the 30s so I know how you feel as I was quite alarmed too.

I also share your frustration on finding it hard to be taken seriously because you look so well. I feel that too.

I wish there was something I could say or do to make things better. I guess it's just the way we're made.

My teeth are like yours too- I have really deep grooves in mine, and it doesn't matter how well I take care of them, my mouth is always going to be full of fillings! I get shaky after the anaesthetics at the docs- they can make my pulse go bananas- that's why I've not been near a dentist for about 2 years now! (shame)

Anyhoo, hope you feel better soon

[Jacquie802]

Hi Julie,

This seems to be the time of the year to get symptomatic... I know I have been having alot worse symptoms and it stinks!

[mom4cem]

Hope you are feeling better. Glad you were able to go out and enjoy some good days.

[Guest Mary from OH]

Hey Julie,

Here's a BIG HUG from Columbus!!! I've been really symptomatic lately too. I wonder if it's had anything to do with our everchanging weather?

I understand your concerns and I, too, hate when it appears that drs don't seeem to be listening to us. Do you think that your beta blockers may be causing your bp to drop too low? I know that you've been on them for a long time, but sometimes things change. I know taht my husband has Vasodepressor Syncope and after several years, he would need to have his meds totally changed because his body would "adjust" to them and he would become symptomatic again. Also, one time, his meds started acting in a paradox way after years of working properly. His electrophysiologist said that this happens some times. Maybe you just need your meds adjusted? I don't know. Just an idea.

Hope you feel better soon!!

[Ernie]

Hi Julia,

Have you tried Proamatine, Florinef and/or compression hose?

[Guest tearose]

Julie!!! ?DISPOSABLE? You are not yourself girlfiriend!

No more of that talk!

Maybe the hormones are out of whack, maybe you are fighting a little virus...this usually can bring on funky changes in my bp at least.

You just need to remember the path...try to take better care of yourself for a bit and if you notice you are much worse after several days...then ask your questions to your pcp. You are allowed to ask again and even remind the doctor that you asked before and did not feel comfortable with the non-response or incomplete response.

I know you are happy with your doctor and/but if you wish to do more testing then begin to plan a savings fund to be able to afford the testing. I think you know your body best and if you feel you need more information then try to get the peace of mind you need to have peace!

take care, tearose

[Guest Julia59]

Thanks to all of you!

I'm OK---not that depressed---more frustrated---I usually snap out of my depression periods---short lived, you know what I mean. It seems to go with what is going on lately with my health.

Ernie, nothing has been mentioned to me by ANY doctor I see to help improve the low blood pressure.

I thought I might go out and get some compression hose---see what happens.

Oh---Tearose---you are so sweet----what I mean by disposable is that the Docs don't seem to take this spine stuff very seriously---and the low BP is another factor. I would expect that someone would be documenting some of this as something to be at least a little concerned about. The neurosurgeons who diagnosed all of this do take it seriously, but there is no one locally to watch over me---to watch me neurologically. I have myelopathy that is progressing, and a good neurologist should be tracking this for me so I know where I'm at with it.

Thankfully, my husband has good insurance----most of my medical care has been covered. What I mean by expenses---is the traveling---hotels, gas----travel expenses. I count my blessings---I could be without insurance.

I think the dental work I had made me crash. Like I mentioned----it was pretty intense, and my jaw is affected by the EDS---along with the instability at the cervical/cranial area----so the whole area is irritated, and my neck is more painful then usual. I think the instability along with the odontoid bone pressing on my lower brain/brainstem area may be a factor on why I feel so bad-------GUESSING HERE----that's all I got folks---unless I travel out of town to NY and get their best guess.

Thanks for the support----I don't mean to sound dramatic---but it kind of is...........

Julie :0)

[dizzygirl]

Julie--soory that you are feeling icky!!!!!!!!

Just wanted to let you know that I'm thinking of you.. and hope that your BP issues get taken more seriously in the future... and that you start feeling better!!

Most insurance will cover all or most of the cost for compression hose.. just get a script from your doc and take it to a um medical supply store.. like here we have great lakes..

I know retail mines cost about 100$..

Hang in there Julie dear.. and feel better soon.. call me if you need too..

hugs

dizz

[calypso]

Julie,

I am sorry to hear you're having BP lows. I am unclear if you are more concerned about the numbers, though, or if you are actually symptomatic from the low BP. If you have no symptoms, I don't think I would be as concerned. Yes, these numbers are low, but I would have your BP checked in a doctor's office early in the morning to make sure they are right, even if you checked your husband's BP and it was on target.

Now if you are symptomatic, then I would probably be concerned as well. You don't want to be fainting, be dizzy, falling, etc. But still, you have Dr. Grubb taking care of you, and he's probably the best person you could have. I don't know if an ANS clinic would be any more helpful.

I don't want you to take this the wrong way, but at some point we all have to accept we are doing the best we can for ourselves, our doctors are doing the best they can for us, and there may not be any more answers or fixes. I know you have issues beyond POTS that relate to the brainstem and cervical instability, so that complicates the picture. And I remember you've had trouble being correctly diagnosed.

But I would certainly hope that after seeing two or three doctors, at least two of them concur on a diagnosis and plan for you. Have you gotten this sort of feedback at this point? If not, that may be the direction to head in. You can always call Grubb's office and ask about the low BP issue, right, to see if there's anything you should be doing?

Have you taken the basic measures to up your BP -- salt, fluids, eating well, etc.?

I wish I had more ideas for you. I hope you get this all sorted out. In the meantime, rest and know you are doing a good job of being your own doctor!

Amy

[Dizzy Dame]

Julie,

I'm sorry your health seems to be going downhill at the moment. I'd go see your doctor if I were you, and get some treatment for that nasty hypotension. Hopefully things will "normalize" soon

(((HUGS)))

Lauren

[Guest Julia59]

Thanks so much for you support---and HUGS-------

The blood pressure issues have been discussed----------I do not have any kind of treatment plan for this.

I took the diary of my BPs for three months to my appointment with the Doc----no plan of treatment was discussed. Only topamax was discussed for pain. Yes, I am symptomatic---and often feel near syncope. I told all my physicians this---but there was nothing about it in the clinical notes.

I just e-mailed the Doc about this---hopefully I'll get an answer. My main concern is that my HR isn't compensating for the low blood pressure. With a BP reading of 67/36, my HR only went up to 88 standing.

I have accepted my illness, what I can't accept is the lack of proper medical treatment for it.

The reason I say go to another ANS clinic---is because I have not had any actual ANS testing other then the TTT---and most recently catecholamines. This is over a 5 year period........... Although the nor-epi, and epi were in the normal range, the dopamine levels were high. The doc considered them normal, but I wished someone would have discussed the results with me further. I had to request the catecholamine test. The NP wanted to try another Beta blocker---and I told her my BPs were already running low---and then I asked to have the test. I was diagnosed with "hyper-adrengic" pots---------based on what?---So I asked to have the catecholamine levels tested.

I'm pretty mentally fatigued from all of this---but I'll find a way to snap out of it-------AGAIN........

Julie :0)

[Guest CyberPixie]

The teeth thing - Is VERY common with EDS. A huge amount of people with EDS lose their teeth by the age of 30 because of it.

Ask the dentist to not use adrenaline in the injections too.

[persephone]

Hey I didn't know that about the teeth- could you explain a bit more?

[Ernie]

Hi,

I would ask a doctor to give me a med for low BP.

[Guest CyberPixie]

Hey I didn't know that about the teeth- could you explain a bit more?

I'm not too sure exactly why it happens but something about the teeth having deep fissures in them, they're also loose in the jaw (gums can be looser too) so bacteria can get in easier and cause decay no matter how well you brush, floss and exclude sugar from your diet. So it's through no fault of your own.

I myself have 8 teeth left.

I also find when I have them extracted they tend to pop out really easily because they're so loose in the jaw. Typically for EDS local anaesthetics dont always work on me so last time I had one out it didnt freeze and he just pulled it out anyway. Barbaric but there's no way I'd be up to a general anasthetic.

They recommend you have your teeth 'sealed' as soon as your adult teeth come through to help stop decay. Too late for me and for most of us here. So if anyone has kids with EDS get their teeth sealed.

[sstephan]

Hi Julie,

Boy do I know where you are coming from. It is a terrible terrible feeling to feel pushed aside by doctors. I once got to the point that I never told them what was really going on with me because I was tired of just being pushed aside and told that I have an anxiety problem due to being a new mother with "hormonal changes." When I think about it, it makes me so angry. I, too, "look well" and "put together" as one doctor told me. For some reason, I can never tell the doctors how bad I really feel and always put on a "it's not so bad" front when I was ready to collapse only a few minutes earlier. I don't know why I do that. I also have terrible reactions to dental work and I have a lot of tooth decay. I am looking for a new dentist as mine does not understand dysautonomia whatsoever. He lowers my head so low that I can't tolerate it. When I tell him I need to come up, he responds in a minute and I tell him I mean NOW not in a minute. Very frustrating. However, reading the posts on DINET makes me aware that I am not alone and others experience the same frustrations. It is not a life threatening illness, just life alterating and very difficult for others to understand. Please hang in there and know that you are not alone no matter how low the doctors make you feel.

Susan