Dizziness when bending over - any help appreciated !

[Dechi]

I have always had dizziness as one of my main symptoms, but for the past month, it has gotten to the point where I can hardly function.

Every time I bend over, even if only for a few seconds, I get very dizzy and weak. I can’t go out of the house anymore and I have no care taker so I am getting really scared.

I had been tested for dysautonomia 2 years ago and the test showed mild neurally mediated hypotention. Now I feel it has gotten a lot worse and I plan to get tested again in the hopes they can offer medication. But this will take months. My doctor is a regular GP just and has no clue what to do with me. I‘m seeing her in two weeks and would like to ask for specific help but I don’t know what.

Any ideas you have will be appreciated as I am getting desperate and wondering how I can live like this for long.

 

[Strawberry]

My brain screams have your neck checked. I have not been checked yet for CCI/AAI or Chiari, but I get stars flying every time I spit toothpaste into the sink. Or even pluck a hair off my left shoulder. If you have any neck pain or have had a car accident, you might ask your GP if you could get an MRI and mention getting dizzy leaning over. I remember Jeff_w saying it was a symptom of his also.

 

[Dechi]

My brain screams have your neck checked. I have not been checked yet for CCI/AAI or Chiari, but I get stars flying every time I spit toothpaste into the sink. Or even pluck a hair off my left shoulder. If you have any neck pain or have had a car accident, you might ask your GP if you could get an MRI and mention getting dizzy leaning over. I remember Jeff_w saying it was a symptom of his also.

No neck pain, no accident. I wouldn’t know where to start about getting tested for CCI/AAI or Chiari. I would think it would be the last possible cause, but who knows.

I managed to move my appointment with my GP tomorrow. She is a young doctor wit no experience, so she won’t know anything about this. Do you know any solid documentation showing the link between ME/CFC and CCI and Chiari I could bring in ?

 

[Wolfcub]

@Dechi You might find something helpful about CCI/AAI on this thread by jeff_w
It's a very long thread with a lot of info, so it might be a lot to take in especially as you need to prepare something for your Doc. tomorrow !

 

[Dechi]

@Dechi You might find something helpful about CCI/AAI on this thread by jeff_w
It's a very long thread with a lot of info, so it might be a lot to take in especially as you need to prepare something for your Doc. tomorrow !

Thank you, I will try to read it. My head is spinning as I type...

 

[Strawberry]

Sorry, I don't know of any documentation either. But if she understands ME/CFS that is a good start. I normally don't mention it at all to my doctors as their eyes just glaze over. But I do think dizzy and muscle weakness/fatigue is linked to neck issues. No one expected it to be ME/CFS though

 

[Dechi]

But if she understands ME/CFS that is a good start

I’ve only seen her once, and she ended our meeting by telling me I should exercise more... to which I replied it’s dangerous when you have ME/CFS and I invited her to read my Ithaca report to understand why.

 

[Zebra]

Hi, @Dechi.

I'm sorry this is happening to you. I've been through this as well.

In your post you mentioned you have mild neurally mediated hypotension and that you'd like to have follow up testing, since it's clearly worsened.

In the meantime, I would recommend compression *stockings* (not just socks) and either adding more sodium to your diet or using an electrolyte drink.

Here is a link to Dysautonomia International that endorses a particular electrolyte beverage and recommends the appropriate compression stockings strength.

http://www.dysautonomiainternational.org/page.php?ID=36

I sometimes remember to gently lower myself (like a dancer's plie) rather than bend over or at least grab a hold of something solid before bending over. Easier said than done, I know. ;-)

Best wishes,
Z

 

[Dechi]

I'm sorry this is happening to you. I've been through this as well.

Thank you for your reply. You say you’ve been through it, so I assume you are better now. Are you in recovery or do you have managing strategies (such as the ones you mentioned) that make it tolerable or even disappear ?

Have you ever been tested for circulating blood volume or had a SPECT circulating blood volume ?

 

[Dechi]

Follow-up : I’ve seen my doctor this morning and she agreed to refer me to the neurologist for retesting of my dysautonomia issues. I was happily surprised she ordered an EKG just to be safe (I had chest pain on and off for a few days) and felt like she was taking me seriously. I will see her again in 2 weeks to review my latest pulmonary tests (for my shortness of breath).

I decided to start taking nimotop again. I took it for almost 3 years and in those years, I did not have such severe dizziness issues. Was it because the illness was recent or was the nimotop helping ? Or a little of both ? I guess I should know after a while, Nimodipine has practically no side effects once your body is used to it so I’m not worried about taking it long term if needed.

I am also upping my salt intake and will put in practice some of the recommendations from the Dysauntonomia international website given to me by @Zebra . Hopefully these few steps will help me.

 

[Zebra]

Hi, @Dechi!

Nice to be in touch!

I don't want to discourage you, but this was a pretty profound symptom for me in the first year or so of ME, but everyone is different!

At the present, I would say that my orthostatic intolerance flares up when I am experiencing a bad crash, usually brought on by physical or cognitive over exertion. (Ugh.)

My tilt table test a few years back put me in the "mild," category of POTS, but it sure didn't feel "mild" to me!

The recommendation from the Autonomic Disorders Clinic, where I was diagnosed, was to 1) drink a lot of water, 2) substantially increase my sodium intake, and 3) wear compression stockings every day.

I wear the full length stockings at home, and when I have to go out (aka to the doctor) I wear the shorter socks. I also wear the toeless kind, which I find to be more comfortable.

I am happy to tell you that my blood pressure no longer plummets when standing or being active, but my heart rate still spikes sometimes.

Additionally, I have significant venous pooling in my legs from the knees down, so the compression stockings have been very helpful at returning my blood back to my upper body, and presumably back up to my head, because I experience much less lightheadedness, standing or even bending over!

I have never had the blood volume tests you asked about, but you have encouraged me to look into them.

I, too, live alone. I feel fairly safe inside, but when my orthostatic intolerance is flared up, I am unable to throw the trash, get my mail, or stretch my legs a bit outside. It doesn't feel safe, and it's very dispiriting. I feel for you!

I think it's smart of you to ask for retesting, although, as you mention, it may be a long wait. :-(

I hope some of my coping mechanisms will work for you!

Best wishes,
Z

 

[Zebra]

Hi, @Dechi!

I think we just posted at the same time. ;-)

I am glad that your appt today went well and that you and your doctor came up with some coping strategies. I hope they help!

Z

 

[Alvin2]

I've had dizziness issues on and off, i think its blood pressure related, though there does not seem to be much treatment available. It waxes and wanes, for a couple years i was really bad then ok and now moderate dizziness issue level so i'm careful. Also my balance shuts off for a fraction of a second here and there, i almost fall over sometimes. Not sure why but again being careful and avoiding problematic situations works ok. And i try to avoid bending down when possible.

Also bear in mind that if your on blood pressure medication for heart issues this might be a side effect.

 

[Dechi]

Also bear in mind that if your on blood pressure medication for heart issues this might be a side effect.

Not my case.

@Alvin2 are you the same person as Alvin ?

 

[Alvin2]

Not my case.

@Alvin2 are you the same person as Alvin ?

Alvin is my evil twin

 

[Dechi]

Alvin is my evil twin

Ha Ha Ha ! I guess not then...

 

[HABS93]

Sorry, I don't know of any documentation either. But if she understands ME/CFS that is a good start. I normally don't mention it at all to my doctors as their eyes just glaze over. But I do think dizzy and muscle weakness/fatigue is linked to neck issues. No one expected it to be ME/CFS though

I've had chronic neck pain for years now. My CFS symptom's came later but I have sarcoidosis. Now sarcoidosis can mimic CFS . But the balance issues I've had now I think are related to neck problems ? If I wear a jacket and go for a walk my back of the neck pain is usually thumb and burning !

 

[Dechi]

Update : the dizziness decreased and went back to my usual levels. It’s hard to know exactly why. I am giving myself a 1 week break from my usual, eternal same exercises that I do for a total of 90 seconds (with breaks every 30 seconds). I have been resting aggressively, not going out except if really necessary.

And I started nimotop again, to see if it will help keep the dizziness at acceptable levels. I’m now taking 1/4 pill per day. I’m starting slow because it’s been more than a year since I stopped taking it.

 

[Gingergrrl]

In the meantime, I would recommend compression *stockings* (not just socks)

@Zebra Is there a difference between "compression stockings" and "compression socks" or are the terms used interchangeably? I'm trying to figure out if the difference might be the amount of pressure of the socks, the height of the socks, or if there really is no difference between the two terms?

Follow-up: I’ve seen my doctor this morning and she agreed to refer me to the neurologist for retesting of my dysautonomia issues.

I will see her again in 2 weeks to review my latest pulmonary tests (for my shortness of breath).

This is great news @Dechi and please update us once you have done the autonomic testing with the Neuro and get the results of your pulmonary function testing for shortness of breath. I am glad that your dizziness has improved a little bit on it's own.

 

[Dechi]

This is great news @Dechi and please update us once you have done the autonomic testing with the Neuro and get the results of your pulmonary function testing for shortness of breath. I am glad that your dizziness has improved a little bit on it's own.

I will. In fact the dizziness is back to my precious levels. I am baffled as to what happened. This illness makes no sense at all. I’m glad but now I fear the neurologist will not find anything wrong with me, as it happens most of the time when I see a doctor. :-(