Having Intense New Symptoms - Dunno If It's From ME/CFS

[Judy]

Hi Friends ~

Wondering. Two weeks ago I started having severe off-balanceness and vertigo (you know, worse than the norm), and yesterday I started having severe lightheadedness. Are these symptoms from ME/CFS? Could it be connected to the tinnitus? ME/CFS since 1997.

Thank You, Judy

 

[San Diego]

Hi @Judy - those are all symptoms that came with my ME/CFS. They get severe during PEM episodes and will flatten me for days. In the past, I would continue to push thru them and end up in bed for over a month at a time, crawling to the bathroom.

Now I know to give up and go to bed immediately. I take valium, zofran, and meclizine and drift in and out of sleep for a few days, which seems to nip the whole thing in the bud.

Do you get nausea/vomiting/diarrhea with yours?

Do you have any orthostatic issues? My lightheadedness seems most associated with my POTS.

 

[Judy]

Hi @Judy This disease is so screwy so it is very possible that your new stuff is from the MECFS. directly or indirectly. I have tinnitus but no balance issues, but it may also depend on the source of the tinnitus.

Can you link these new symptoms to something new you started to take? For me there is always a culprit causing something new. For me nothing every happens in a vacuum.

Also some of your things sound like maybe disautonomia.

Sorry I can't help more.

I've heard of POTS in passing but never paid attention to it. Now I guess I will. Thank You WhoMe

 

[Judy]

Hi @Judy - those are all symptoms that came with my ME/CFS. They get severe during PEM episodes and will flatten me for days. In the past, I would continue to push thru them and end up in bed for over a month at a time, crawling to the bathroom.

Now I know to give up and go to bed immediately. I take valium, zofran, and meclizine and drift in and out of sleep for a few days, which seems to nip the whole thing in the bud.

Do you get nausea/vomiting/diarrhea with yours?

Do you have any orthostatic issues? My lightheadedness seems most associated with my POTS.

Wow. @San Diego I didn't realize I had POTS like so many others, but now I think I must. Whereabouts in San Diego are you? I'm in El Cajon. Do you have an ME/CFS doctor here? I don't, but after searching for 18 years I found a DO who is at least interested and teachable. I don't know if going to her about this will help me? Judy

 

[Who Me?]

@Judy @San Diego is not in san diego but there is a doc in La Jolla who does Pots. He comes highly recommended.

https://www.scripps.org/physicians/5746-thomas-ahern

I don't know of anyone in San Diego who treats MECFS but I found a decent naturopath in OC so that might be a way to go. Just google. Some docs are very open to things, some will tell you to see a shrink. Some understand you are sick but aren't interested in helping.

Most of the progress I've made, or at least staying stable has been from things I've read about on forums.

 

[Issie]

I think a good many CA people come here to AZ to see the docs at Mayo. My doc is Dr Brent Goodman a neurologist and specialist in POTS. Only one officially that I know of close by. I've met people from CA who came here to see him.
Issie

 

[Issie]

I think a good many CA people come here to AZ to see the docs at Mayo. My doc is Dr Brent Goodman a neurologist and specialist in POTS. Only one officially that I know of close by. I've met people from CA who came here to see him.
Issie

I found Mayo to be a good place to get diagnosed but not treated.
Issie

 

[San Diego]

Wow. @San Diego I didn't realize I had POTS like so many others, but now I think I must. Whereabouts in San Diego are you? I'm in El Cajon. Do you have an ME/CFS doctor here? I don't, but after searching for 18 years I found a DO who is at least interested and teachable. I don't know if going to her about this will help me? Judy

Long story, but I’m nowhere near California. lol Best of luck in finding a doctor!

I found Mayo to be a good place to get diagnosed but not treated.
Issie

Different Mayo, but I’ve had nothing but misery at the one in Florida. The only thing they’ve done is take away diagnoses that took me years, and very specialized doctors, to pin down.

For example, my POTS was fairly well treated the day I saw the “dysautonimia specialist” neuro at Mayo, so he stripped away my POTS diagnoses and replaced it with “anxiety”. Shoot me! Fortunately, I have my POTS well documented everywhere from my cardio to my PCP. but still .....

I think the trouble is that the Mayo will not accept results from anywhere else. They only trust their own. Caveat Emptor!

 

[Issie]

Long story, but I’m nowhere near California. lol Best of luck in finding a doctor!


Different Mayo, but I’ve had nothing but misery at the one in Florida. The only thing they’ve done is take away diagnoses that took me years, and very specialized doctors, to pin down.

For example, my POTS was fairly well treated the day I saw the “dysautonimia specialist” neuro at Mayo, so he stripped away my POTS diagnoses and replaced it with “anxiety”. Shoot me! Fortunately, I have my POTS well documented everywhere from my cardio to my PCP. but still .....

I think the trouble is that the Mayo will not accept results from anywhere else. They only trust their own. Caveat Emptor!

I'm in AZ, so Mayo, AZ. I hear not so good things about FL. But most that have come here, have been happy.

Yes, once something is on your record at Mayo - even an act of Congress can't get it straightened out. Even with other docs telling the "arrogant ...... doc" she was wrong. You have to get it fought through their group meetings and they can't force the doc to recant it. To get that discussion going you need to write an appeal letter - thats when the "discussions" go on between the docs. And then if you dont get it straight - a letter of Disagrerment and have it attached to every page you disagree with. Then whoever sees your notes knows why you feel it's wrong. Worked just fine for me. Went to Mayo before POTS was even barely known about here. Now that there is a "specialist" all is clear. I'm also the one who "encouraged" them into looking into MCAS and EDS. (My Neuro laughed and said I had caused quit a bit of discussion and frustration with the immunologist. He had written letters for them to get someone in there to research and look into MCAS, cause he now felt it was relevant.) I have quit a history with Mayo and the place in time that we are now in regards to POTS, MCAS and EDS. Oh.......I could write a book.

Issie

 

[Onslow]

Different Mayo, but I’ve had nothing but misery at the one in Florida. The only thing they’ve done is take away diagnoses that took me years, and very specialized doctors, to pin down.

For example, my POTS was fairly well treated the day I saw the “dysautonimia specialist” neuro at Mayo, so he stripped away my POTS diagnoses and replaced it with “anxiety”. Shoot me! Fortunately, I have my POTS well documented everywhere from my cardio to my PCP. but still .....

I think the trouble is that the Mayo will not accept results from anywhere else. They only trust their own. Caveat Emptor!

The problem is that many doctors like to pigeonhole conditions into "POTS" or "dysautomnia" or similar, but that doesn't work with those conditions. It seems as if CFS, POTS, dysautomnia are likely all the same thing. The symptoms come and go, and anxiety is another symptom of the dysautomnia. So all your diagnoses are technically correct, albeit useless.

You would be better going to a doctor/hospital who really understands CFS and can treat it effectively without using quackery. Unfortunately there are very few of those places, perhaps a handful in the entire world.

You're really just better off treating your CFS yourself at this point in time. I recovered about 15 years ago and there was no info out there so I had to just figure it out myself (my prescription for recovery is very similar to Fred Friedberg's). These days there is a lot more info, although there's also a lot more quackery, disinformation and pseudoscience as well, so it's very hard to sift the wheat from the chaff.

 

[Issie]

It's true, most of what has helped me has been what I came to the conclusion to try. But, you have to have some docs who are open minded enough to listen and let you try it. Some things have to be monitored and liver and kidney function watched. We can do alot on our own, but some testing is still in order. I think diet is one of my key helps.
Issie

 

[San Diego]

So all your diagnoses are technically correct, albeit useless.

I understand what you are saying, but there are some exceptions.

Unfortunately, when it comes to a disability trial, those diagnoses are vital. When it comes to family and friends’ support, those diagnoses can be vital.When it comes to insurance reimbursement for unusual items, those diagnoses are vital. And so on.

Now, do they make any difference with regards to my treatment? Not so much. For that I’m in the hands of a well-known ME expert and a local PCP with an open mind.

 

[Cort]

Hi Friends ~

Wondering. Two weeks ago I started having severe off-balanceness and vertigo (you know, worse than the norm), and yesterday I started having severe lightheadedness. Are these symptoms from ME/CFS? Could it be connected to the tinnitus? ME/CFS since 1997.

Thank You, Judy

As others have noted those symptoms are common in ME/CFS and can be indicative of orthostatic intolerance / POTS. You might try increasing your fluid / salt intake to get your blood volume up and see if that helps. Check out the Resource section of the Forums to find out ways to do that.

 

[Who Me?]

I think a good many CA people come here to AZ to see the docs at Mayo. My doc is Dr Brent Goodman a neurologist and specialist in POTS. Only one officially that I know of close by. I've met people from CA who came here to see him.
Issie

Most Californian's go to Kaufman, Montoya or Peterson and KDM in Nevada. I don't know one person who went to Az for treatment.

 

[Who Me?]

@Judy Many of us treat ourselves but not in a vacuum. Most people I know have had labs run so they can get an idea what's going on and what to look at. There's no point in taking antivirals if you have no viruses for example.

And yes most docs are idiots but they can be a tool to get labs run to narrow down what you need to look at. Or focus on areas that might be an issue. I fought for months to get someone to test me for mycoplasma pneumonia. I just knew it was a problem. I finally talked my PCP into it, he had never heard of it, and boy was I ever right. I had really high current infection. Based on that I treated myself with antibiotics.

No one here can diagnose you for sure so you are left to listening to what others have done and based on that use your own judgement on what to do. Just be aware because some stuff can F you up.

 

[Issie]

Most Californian's go to Kaufman, Montoya or Peterson and KDM in Nevada. I don't know one person who went to Az for treatment.

If you want a DX for POTS or other dysautonomia - Mayo, AZ has been a good place for that. Dr Goodman Is the Neuro who specializes in POTS.
Issie

 

[Who Me?]

I don't think OP knew for sure she had POTS. I was talking about MECFS docs.

Perhaps post that info in the doctors resource here for others to see .

 

[Merida]

@Judy
Has your vertigo resolved ? I had this after some dental work on my lower jaw. Yes, I have tinnitus too, and I believe this is all part of complex TMJ dysfunction. I tried everything to resolve this misery. Acupuncture did not help, but a good reflexologist finally solved the problem. As he worked I began to feel the sensation of hot air blowing out my right ear. When this stopped, the vertigo was gone for good. Pretty crazy.

 

[Tracy Williams]

Hi Friends ~

Wondering. Two weeks ago I started having severe off-balanceness and vertigo (you know, worse than the norm), and yesterday I started having severe lightheadedness. Are these symptoms from ME/CFS? Could it be connected to the tinnitus? ME/CFS since 1997.

Thank You, Judy

I don't know if it's related yet but the same exact thing happened to me. It started with a fullness feeling in my left ear but I kept going to doctors who told me there wasn't a problem. Then a few times completely out of the blue I'd get such bad vertigo I couldn't walk or drive so I called my doctor who said get to the wrong immediately you could be having a stroke but after MRI' showed nothing they gave me diazepam and it went away. Then it kept happening about every 3-6 mos. same protocol then one day I was at work calling my husband to remind him I had a hair appointment when in mid sentence all I could get out was "oh know! Something is happening and I dropped the phone and fell out of my chair. He had to come get me and guide me to his car but I had to vomit 3 times because the world was spinning so fast I had to crawl to the car. I finally went to an ear specialist who diagnosed me with Minieres disease. I've had 3 procedures each helping for a year. I did some research and there are a lot of people who suffer from both and the U.K. Has done studies about their being a conection. Go to an ear nose and throats doctor and tell me how it turns out. In the mean time go buy some motion sickness meds like Dramamine. It helps a lot. I had to add long lasting larazapam too because that's the only treatment for virtigo.

 

[Learner]

Might you have some sort of infection or autoimmune antibodies?