DeGenesis

I've tried before at the hospital and at testing and nobody ever lets me go upstairs or anything during testing. I have a cardiologist soon though so I'm hoping they'll do a stress test.

Let's you? What's stopping you from getting up and walking up a flight of stairs, or otherwise exerting yourself?

It seems to me then, that you should be admitted to hospital, and then do something tasking so that medical staff can see for themselves what is going on. If you can not get admitted to the hospital for this reason, then you are at the wrong hospital, or need to assert yourself more.

I don't know that anyone here can tell you definitively that chemo causes autonomic issues but it certainly makes sense that it could be the root cause for you.

On the contrary, chemotherapy is a well known cause of peripheral neuropathy and autonomic dysfunction. However, Hodgkin's can also cause autonomic dysfunction.

It would be more correct to say that no one here can tell you definitely that your chemotherapy is the cause of your autonomic issues.

Of course none of us here are doctors, but even if we were, we would still just be rendering an opinion. Even in the case of non-subjective testing, such as a skin biopsy, its interpretation is also an opinion and different doctors might come to different conclusions.

Also, it should make your doctors take you more seriously if you are treated by EMTs or the ER for low oxygen.

This is a great point. I have always been taken more seriously at the ER when brought there by EMS. They are also much more thorough when taking your medical history than the triage nurses, who always seem in a rush.

No EMT will begrudge you for calling an ambulance, especially with your symptoms.

Changes in barometric pressure can trigger a lot of odd things, although the usual presentation is a migraine.

Have you been tested for small fiber neuropathy? Small fiber neuropathy is a common cause of POTS, and can be caused by chemotherapy.

If you are interested, I can post more information on drugs and supplements that can aid in peripheral nerve cell repair.

I have had several petit mal seizures (now called partial seizures), but the neurologists I have seen do not take them seriously. I also had a negative EEG. I hope that it does not develop into a seizure disorder. I have heard of many cases starting in this way.

Sarah, I am glad that you tolerate Keppra. If you don't get the rage or depressive spells, Keppra is one of the best medications for controlling epilepsy. There is also a new drug called Fycompa, which many doctors are not aware of. It is only approved to treat partial seizures, but so is Keppra, and it has turned out that Keppra has broad-spectrum anticonvulsive activity.

If you have had a traumatic brain injury, as seems to be the case from your MRI, methyphenidate (Ritalin, Concerta, Focalin, etc.) are standard treatment options to improve cognitive impairments post TBI. There is much research to support this, and it should not lower your seizure threshold significantly, if at all. Consider seeing a specialist in TBIs.

No sorry DeGenesis. I can't seem to help here. I did show decreased blood cell mass. I hope your research leads to more answers! God Bless.

Thank you for your kind wishes.

Hi everyone. This syndrome is described and listed here as a cause of dysautonomia:

http://www.dysautonomiainternational.org/page.php?ID=150

Thank you indeed for the link!

I've been thinking about this more, and I wonder if this is a presentation of anaphylaxis. You have respiratory and nervous system involvement. Do you have any other symptoms of an allergic reaction during these episodes? Have you had a chance to take your blood pressure when you feel an episode coming on, if indeed you can?

For those of us who are new to the forum, can you please elaborate on the reason for your neck surgery, or provide a link?

Good luck!

The longer seizures go untreated, the more likely they are to become a chronic issue. I am not a doctor, but it seems obvious to me that you should be recieving some pharmacotherapy while the cause of your seizures and oxygen saturation issues are sorted out. A benzodiazepine is the preferred short-term therapy since it has a broad-spectrum of action against many different types of seizures.

Do you wheeze or hyperventilate when you have these attacks? Can you describe them in any more detail?

1) Do you have a neurologist? A neurologist deals with seizures and epilepsy, as you probably already know. I assume a neurologist referred you to the pulmonologist because he thought your low oxygen saturation levels were to blame for your seizures. If the pulmonologist disagrees that there is a problem with your oxygen saturation levels, he should converse with your neurologist. If he will not, have your neurologist contact the pulmonologist.

2) When my grandfather was in hospital with pneumonia, his respirologist increased his oxygen whenever it fell into the 92-94% range.

3) Are you asthmatic, or do you know of any other reason why your oxygen saturation might be an issue?

4) Next time you have a seizure, go to the ER. Enough is enough.

5) Do you live in the UK?

DeGenesis, it sounds like you are very knowledgable re this. Thank you for responding. I am going to discuss this with my doctors. It is worth a try. I do take midodrine which helps the blood pooling so much. I don't know if I can take them both. I will get the docs opinion. I have a hard time asking for things like this because I am afraid they will think that I am trying to be a doctor myself.

You are very welcome.

Hopefully your doctor thinks of your relationship like a partnership, rather than one sided. If your doctor is not like this, I find it best to stroke their ego, and then slip in suggestions on the sly, as if they were the ones who thought of it. This article, although geared towards patients seeking a Bipolar II diagnosis, may be helpful.

http://www.psycheducation.org/depression/doctalk.htm

Has anyone been diagnosed with this condition? I have immune thrombocytopenia and APS could explain many of my symptoms. I would have to travel to the USA to get tested.

I hate feeling cold, and I get cold easily, but it's much better in terms of symptom burden than being hot.

Sulbutiamine, a form of B1 that passes the BBB, makes me feel wired and gives me insomnia. I have yet to try benfotiamine on its own. There was a lot of discussion about thiamine on Imminst back in the day.

Has Tyler tried dibencozide (adenosyl B12)? Fredd of methylation fame thinks that both methyl and adenosyl B12 are needed for complete recovery. Try a search for the so-called "Dead-lock Quartet". You already have 3 out of 4 bases covered.

Dat PEM. I think PEM is misunderstood though. Any life stressor can set off PEM-like symptoms in me.

The answer is that we don't know. It is only recently that large numbers of people have been diagnosed with POTS and/or CFS/ME and long-term outcomes are not known.

Any screen, monitor or television, will give me a migraine eventually. This is completely unexplained. I find it very isolating.

Both my daughter and I have been officially diagnosed. I suspect 2 of my 4 siblings and a couple of nieces have it as well.

My POTS doc says it tends to run in families but he didn't know of any particular studies showing it other than the ones related to a particular family with the NET gene abnormality and the ones with the specific type of inherited familial dysautonomia.

It seems like a lot of the veterans here have been diagnosed with MCAD, and are treating it aggressively. Hmm..

I am terrifed of POTS and being anesthetized. My fear is that I will actually faint during the operation, and the anesthesiologist would not know because my blood pressure would be normal.

I chose to have a gastroscopy without sedation. Big mistake.

I'm sorry I can't advise you on the possibility of a masectomy.

Some doctors in certain states and provinces are too eager to revoke licenses when they hear issues about consciousness. Perhaps something to do with liability. Obviously you should not be driving if you are presyncopal in a seated position, but I have seen doctors revoke licenses for much less. A friend of mine had her license revoked after she told her PCP that she had insomnia and felt drowsy during the day.

Just be careful, that's all.

I guess what I'm getting at, is that acceptance will reduce your mental suffering greatly.

Also, none of us can predict the future, and paths that we think are leading us astray might be a detour to greater things.

"

All that is gold does not glitter,
Not all those who wander are lost;
The old that is strong does not wither,
Deep roots are not reached by the frost.

From the ashes a fire shall be woken,
A light from the shadows shall spring;
Renewed shall be blade that was broken,
The crownless again shall be king.

"

This is a beautiful piece of poetry written by Tolkien for LOTR, but It is applicable to much, much more. I hope you enjoy it even a fraction as much as I do.

That makes a lot of sense. A lot of doctors are completely baffled when I present with both presyncopy and high blood pressure.

I am glad that you have some answers.

Blood pooling in your calves puts you in the "High-flow" neuropathic POTS subgroup. Midodrine (I assume you have already tried it) and Mestinon seem effective in this subgroup.