I'm having "episodes" again where I feel like I'm going to faint. Right now they're pretty bad while I'm in the shower.

It starts out with feeling like my chest is tight and I'm short of breath. Then I start to feel kind of nauseous and just not right. Then I start to feel kind of dizzy and faint and I have to sit down right away. If I let it get to far I start to see spots in my vision. It takes me about a half hour of lying down to recover from this.

It happens most regularly when I take a hot shower but I also get these "episodes" sometimes when I've been standing up for too long. It sounds to me like Neurally Mediated Hypotension but my blood pressure has always been normal (right around 110/70 - 130/80 or so).

Any thoughts? I go back to my LLMD on Thursday and I plan to talk to him about this but I'd like to have some idea of what it might be.

Thanks,
Annie

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``The best way out is always through.'' -Robert Frost

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After 8 months of antibiotics for lyme and babs, and even with great improvement in my breathing, heart rate and bp, I still cannot take a shower.

I take baths now, and if the water is too hot, I am dizzy getting out and must lie down. So it is the heat on this one.

My advice, don't take showers.

It does sound like it might be NMH or something similar. One way you can tell if you are having a problem is to check your BP and HR while standing and then again while lying down. If there is a big difference in the two it's likely you may have this.

There is usually at least a 20 point difference in my HR from standing/lying. If I'm having a really bad day from the POTS it's more like 30 or more. There is a big difference in my BP also. The way to get a definite dx is a tilt table test although I never had to have one. Mine was very obvious since the dr stood me up and I fainted and fell on him.LOL I can laugh now. My BP and HR told him what he needed to know then. I truly hope you don't have this on top of lyme. It can be very debilitating.

I hope this makes a little sense. I'm having a really bad day today. I just don't know if it's from lyme, POTS, CFS or what. So confusing and frustrating. If you have any questions you can email me and I will be glad to help if I can.

I took a shower daily before coming down with lyme.

Now, it is rare that I take a shower and a real treat when I do.

It took me a while to get in the habit of taking a bath instead.

Even taking a bath is not easy most of the time and I have to wait until I am strong enough to get in and out of the bath.

I have handicap bars on the walls of the tub so this helps a lot.

I have had a couple of times when I could not get out of the tub when I wanted to and had to wait it out.

Now, I just try not to get in the tub when I am that weak.

I must admit I would prefer a shower. But, it is not safe most of the time...so a bath it is when I am able.

I had a previous LLMD who did the standing/lying down BP test and my BP was apparently higher when I stood up than when I was lying down but it wasn't a very thorough test and he used the same arm which I think could possibly mess up the test. I honestly think that even with my "normal" BP it's very likely that I have NMH or something like that.

I will let you all know what he says about it and whether or not I'll need to have the TTT done. (My friend and her mom went through so much trying to get insurance to cover the test that I'm worried about having to deal with that, too, but I'll do it if my LLMD feels it would be helpful.)

--Annie

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``The best way out is always through.'' -Robert Frost

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I can't remember who here told me this, but I posted some time ago about how I was getting dizzy when I took a bath or used the hot tub.....

I was told that the hot water was killing off the keets somehow and it was causing some type of a herx.

Not sure if this is true or not, but when I brought it up to my PCP she said it could be possible.

Anyways, as I have gotten better and stopped taking meds, I have noticed that this no longer bothers me. Which makes me think there may be some truth to this theory.

I will say that if I'm really run down or stressed and take a hot bath, I still get a little light headed when I'm in the bath, but nothing like before.

Also just a couple of tips to insure your safety while in the bath....I just wanted to say that when I was still sick and taking baths...We used a baby monitor. this way, I could call my husband if I felt like I was getting light headed.. And my hubby would come in and check on me every 5 mins or so..just to be on the safe side.

Hope this helps some...

Hydration is super important. Drink lots fo water during the day, and add salt to your diet. Heat makes it worse, so avoid prolonged standing in hot weather, long lines, etc.

I do take baths! (Kam LOL)
Heat is good for us, and the bath is fine...until I stand up to get out, then its like, hurry up and run into bed before I faint. Make sure you dont pass out in the tub and drown PLEASE! Shower chairs are a great thing to have and cooler water temp is good. A chlorine filter on your shower is also important. I have a bunch of NMH and POTS links on my lymelinks page.
The Tilt Table Test is super important as a diagnostic tool to see where the problem lies, and them appropriate treatment. Magnesium helps too!

The orthostatic BP must be done immediately as you stand up from a seated position, your BP is taken to record the drop.
It may not occur all the time.
Good luck to you!!

Anyone experiencing this problem needs to have a tilt table test performed by a cardiologist. The blood pressure cuff when you are laying down vs standing is not effective to determine the actual cause and something important may be missed. Also, make certain that the test is done at a place that includes the use of nitro or a similar drug after the first 20 minutes. I discovered a hospital here that does not use anything with the tilt table and I do not believe they are doing proper testing. Since the table has a 70-80 degree tilt, some of us with this problem could probably lean back against that table, straining to remain upright, for a very long time before anything would show up. The nitro shortens the time and probably helps a lot diagnostically as well.

As for the weakness in the showere, the reason you are getting so weak so quick from hot water or a hot day is because your blood vessels are dilating (expanding) and this gives the vessels less tone to force blood back up to your heart and brain. If you are prone to this, then it is very likely you have this problem when doing other tasks - such as standing to wash dishes or cook or stand in line.

Generally, those problems take a little longer to kick in than the problem you experience in a hot shower since you're not encouraging it as much by using heat. However, for many of us it does not take too long under those conditions where we are just trying to stand still.

One thing I might suggest is that if you are feeling especially faint in the shower you may want to try to turn the water to a colder temperature for a short time. This will cause your blood vessels to constrict and it may help you to recover a little faster. No guarantees but its always worth a try.

******
Hey, Big Bird, I have a question for you. Have you ever tried CoQ10 and if so, how much? Did it help you any with this problem?

The reason I'm asking is because I was using the stuff for about a month and just finished a month ago. At that time, it seemed like I had a little lessening of this symptom but I can't decide if it was my imagination or it really happened. I was only using 100mg per day and I ran out of the CoQ10 about a month ago. I didn't bother to buy any more but my problem is just as bad as ever now. So, was it that the checkout lines were lighter before Christmas and that deluded me into believing things were better or did I really experience some improvement?

I've decided that I'm going to experiement with it again. I read some research where it showed promise in helping those with neurogenic disorders. I only had the abstract so couldn't read the full article to see how much was needed but I'm going to use 300mgs daily for a few months to see if it's worth continuing. I bought my latest batch of CoQ10 at Costco so it'll run around $20-$25 per month which is a lot better than most places.

CQ10 is good stuff, I take 300 mg usually. Its expensive and lately I have been taking 100 mg. I honestly never noticed any change during taking the CQ10 or not taking it.
Let us know what happens when you start it up again, and stand in line!
People with POTS,NMH should be able to get handicapped parking stickers as well. Store lines can really wipe you out for days if your NMH is not under control.
And absolutely, your Tilt Table test MUST be done with the second part, the Isuprel (or similar agent) challenge!
Hope you all feel better!

I'd like to say both thanks and rats. Thanks for replying and rats for not giving the 'correct' answer!

1: Biochim Biophys Acta. 1995 May 24;1271(1):281-6

Two successful double-blind trials with coenzyme Q10 (vitamin Q10) on muscular dystrophies and neurogenic atrophies.

Folkers K, Simonsen R.

Institute for Biomedical Research, University of Texas at Austin 78705, USA.

Coenzyme Q10 (vitamin Q10) is biosynthesized in the human body and is functional in bioenergetics, anti-oxidation reactions, and in growth control, etc. It is indispensable to health and survival. The first double-blind trial was with twelve patients, ranging from 7-69 years of age, having diseases including the Duchenne, Becker, and the limb-girdle dystrophies, myotonic dystrophy. Charcot-Marie-Tooth disease, and the Welander disease. The control coenzyme Q10 (CoQ10) blood level was low and ranged from 0.5-0.84 microgram/ml. They were treated for three months with 100 mg daily of CoQ10 and a matching placebo. The second double-blind trial was similar with fifteen patients having the same categories of disease. Since cardiac disease is established to be associated with these muscle diseases, cardiac function was blindly monitored, and not one mistake was made in assigning CoQ10 and placebo to the patients in both trials. Definitely improved physical performance was recorded. In retrospect, a dosage of 100 mg was too low although effective and safe. Patients suffering from these muscle dystrophies and the like, should be treated with vitamin Q10 indefinitely.

Publication Types:
* Clinical Trial
* Controlled Clinical Trial

PMID: 7599221 [PubMed - indexed for MEDLINE]

**********************

1: Biofactors. 1999;9(2-4):261-6

Coenzyme Q10 administration and its potential for treatment of neurodegenerative diseases.

Beal MF.

Neurochemistry Laboratory, Massachusetts General Hospital, Boston 02114, USA.

Coenzyme Q10 (CoQ10) is an essential cofactor of the electron transport chain as well as an important antioxidant. Previous studies have suggested that it may exert therapeutic effects in patients with known mitochondrial disorders. We investigated whether it can exert neuroprotective effects in a variety of animal models. We have demonstrated that CoQ10 can protect against striatal lesions produced by both malonate and 3-nitropropionic acid. It also protects against MPTP toxicity in mice. It extended survival in a transgenic mouse model of amyotrophic lateral sclerosis. We demonstrated that oral administration can increase plasma levels in patients with Parkinson's disease. Oral administration of CoQ10 significantly decreased elevated lactate levels in patients with Huntington's disease. These studies therefore raise the prospect that administration of CoQ10 may be useful for the treatment of neurodegenerative diseases.

Publication Types:
* Review
* Review, Tutorial

PMID: 10416039 [PubMed - indexed for MEDLINE]

*********************

1: Arch Neurol. 2002 Oct;59(10):1541-50

Effects of coenzyme Q10 in early Parkinson disease: evidence of slowing of the functional decline.

Shults CW, Oakes D, Kieburtz K, Beal MF, Haas R, Plumb S, Juncos JL, Nutt J, Shoulson I, Carter J, Kompoliti K, Perlmutter JS, Reich S, Stern M, Watts RL, Kurlan R, Molho E, Harrison M, Lew M; Parkinson Study Group.

Department of Neurosciences, Mail Code 0662, University of California-San Diego, 9500 Gilman Dr, La Jolla, CA 92093-0662, USA. [email protected]

BACKGROUND: Parkinson disease (PD) is a degenerative neurological disorder for which no treatment has been shown to slow the progression. OBJECTIVE: To determine whether a range of dosages of coenzyme Q10 is safe and well tolerated and could slow the functional decline in PD. DESIGN: Multicenter, randomized, parallel-group, placebo-controlled, double-blind, dosage-ranging trial. SETTING: Academic movement disorders clinics. PATIENTS: Eighty subjects with early PD who did not require treatment for their disability. INTERVENTIONS: Random assignment to placebo or coenzyme Q10 at dosages of 300, 600, or 1200 mg/d. MAIN OUTCOME MEASURE: The subjects underwent evaluation with the Unified Parkinson Disease Rating Scale (UPDRS) at the screening, baseline, and 1-, 4-, 8-, 12-, and 16-month visits. They were followed up for 16 months or until disability requiring treatment with levodopa had developed. The primary response variable was the change in the total score on the UPDRS from baseline to the last visit. RESULTS: The adjusted mean total UPDRS changes were +11.99 for the placebo group, +8.81 for the 300-mg/d group, +10.82 for the 600-mg/d group, and +6.69 for the 1200-mg/d group. The P value for the primary analysis, a test for a linear trend between the dosage and the mean change in the total UPDRS score, was.09, which met our prespecified criteria for a positive trend for the trial. A prespecified, secondary analysis was the comparison of each treatment group with the placebo group, and the difference between the 1200-mg/d and placebo groups was significant (P =.04). CONCLUSIONS: Coenzyme Q10 was safe and well tolerated at dosages of up to 1200 mg/d. Less disability developed in subjects assigned to coenzyme Q10 than in those assigned to placebo, and the benefit was greatest in subjects receiving the highest dosage. Coenzyme Q10 appears to slow the progressive deterioration of function in PD, but these results need to be confirmed in a larger study.

Publication Types:
* Clinical Trial
* Multicenter Study
* Randomized Controlled Trial

Good Article!!
Go back on the CQ10 and lettuce know how it goes! yaa!

Again, thanks so much for all the input and advice. I'm really convinced that I have NMH because my symptoms just fit so well. I have this problem most prominently in the shower (baths don't seem to bother me because I'm sitting down) but I also get it when standing up for too long ANYWHERE. I've adapted and prevented myself from passing out by shifting my weight, bending over a cart at the store, or squatting down when I just don't feel I can stand any longer.

I'm going to ask my LLMD if he'll order a Tilt Table Test to get to the bottom of this. I do know that salt and water are very important to reduce the symptoms since my friend has neurocardiogenic syncope (basically the same thing). She does a saline drip every day that has helped her tremendously. Since I'm seeing the same doctor I think he knows quite a bit about it and would know how to best treat it.

Thanks again. I'll let you know how I make out at the LLMD's tomorrow. (I'm leaving this afternoon for the doctor and staying over tonight since it's supposed to be crummy weather tomorrow morning).

--Annie

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``The best way out is always through.'' -Robert Frost

Click to join Lyme_Camp

Click here to see my Lyme journal.

Be careful when trying to consume foods with more salt. When I tried this my symptoms became worse. I was also puffy. It did nothing positive for me but everyone is different and it likely helps some people.

In line with that, I'd like to advise you and anyone else suffering from this problem to avoid processed foods as much as you can. Go toward a whole foods diet as well as stay away from commercial sauces that you would normally use to flavor your food because many are laced with unlisted glutamate.

The reason I am making these suggestions is due to the fact that these commercially prepared foods, esp things that flavor your foods, contain chemicals that are designed to enhance the flavor. These are chemicals, not food, and they are neurotoxins thus damaging your nervous system. They can greatly increase the symptoms you suffer on a daily basis. My neuro problems get really bad when I consume commercial foods and I have very visible tremors. However, when I stay away the symptoms are not nearly as bad and I have no tremors.

Go to www.truthinlabeling.org to learn more about the dangers of these chemicals. Additionally, the book Excitotoxins by Russell Blaylock is very informative as to the damage caused by this stuff.

By they way, CoQ10 helps to protect the body from this damage. We've all got some form of threshold to these chemicals. Lyme seems to lower the threshold but CoQ10 seems to raise it a little so that you can handle a little more "normal" foods on a daily basis.

Take care,

Do you know if she does ART testing & Neural Therapy for Metals detox?
Thanks

I just got back from my LLMD. He has ordered a Tilt Table Test to see if this is indeed what it is but he pretty much thinks that's what it is even without the test. Since I don't seem to have it too badly, he thinks we will probably be able to get it under control but that's yet to be seen.

Angie, I will be careful about the salt. My LLMD doesn't want me to up my salt intake right now because my BP tends to be a little on the high side of normal and he doesn't want to push it up any further. I am doing dietary changes for other reasons which means eating more whole foods anyway. I'm doing it on a trial basis for a while to see if it makes a difference. It'll be hard but I'll give it a shot.

Lymelighter, I wasn't seeing Dr. H today. I'm seeing a LLMD in upstate NY (Albany) because Dr. H didn't feel she knew what to do next. So far he (my new LLMD) has been very good - I was referred by a friend who also sees him so it's nice to get to see her once a month, too!

Thanks again, everyone. I'll update after I've had the TTT done (probably not for a few weeks since I'm about to go away to visit my sister).

--Annie

------------------
``The best way out is always through.'' -Robert Frost

Click to join Lyme_Camp

Click here to see my Lyme journal.