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Topic Severe facial heat/panic attacks, any solution? Go to previous topic Go to next topic Go to higher level

By housemouse On 2011.11.22 18:55
The trip to Mayo didn't find a solution, other than counseling, and my husband is desperate because of the pain this is causing.

He is so miserable that he can't think, can't talk, can't read, etc.

Has anyone else dealt with this problem? My son is vocally upset with his Dad for canceling Thanksgiving, and doesn't know how to explain it to the grandchildren. This doesn't help the situation much.

I do not want to leave him alone, as it feels like betraying our marriage vows.

What to do!

By LOHENGR1N On 2011.11.22 23:47
housemouse, Facial heat and panic attacks. All I can do is ask the standard question has he had a med's adjustment lately? I would guess the mayo clinic did't find infection or anything of the like so ruling that out, we're left with We can flush (redden) and feel hot, sweat (dripping wet sweat) at times just from taking our medicines and our body trying to absorb or assimilate them. Panic attacks could be coming from this going on and not knowing what is happening.

Also the panic attacks can be from either too much dopamine or too little. The balance of these chemicals in our brain is a tricky thing. If from too little or too much counseling isn't going to do much until the balance if achieved. It would be akin to having one leg shorter than the other and before you got a shoe with a built up sole having the Doctor say don't step down on the ground with the shorter leg just step on the air until you get the new shoe. It's useless to try.

The Son? Too bad, get over it seems selfish to Me to want his Father to suffer even more through this because he doesn't know how to explain it to the grandchildren? I think the counseling would be better placed there. Sorry if this seems too blunt, sometimes bluntness is what is left.

What to do, love him, make it as nice as you can. There is life after Parkinson's for those we leave behind. Thanksgivings will come and go, all We can do is try to be nice to each other on the ones we have left. Take care, best of luck and hang in there.

By susger8 On 2011.11.23 11:28
He isn't taking Topomax for anything, is he? My sister had panic attacks, very severe ones, caused by Topomax.

Sue

By parkinit On 2011.11.23 12:12
Clonazepam (and other drugs) is used for the panic. Is he taking this?

Also, perhaps the son needs more of an explanation. This disease is difficult for we, the caregivers, to understand, let alone others. Maybe he needs to understand about panic attacks, etc., related to the disease. Maybe it is time you sat down with him to explain how the mind is affected, how the drugs sometimes work or don't work, how this disease robs people of their lives and that others need to be more understanding - especially family.

Sometimes it takes us to educate others. Sometimes others don't want to be educated, but with kin, I would at least try to explain the situation a bit more in depth so judgements are not to harsh and there is more understanding and harmony in the family.

By housemouse On 2011.11.25 00:25
He is on Clonazepam - hasn't helped much, so the Psychiatrist is trying other drugs - first Gabapentin. made him tired, slow, feet felt glued to the floor,etc.

So, the Gabapentin didn't work (flushing continued, but not so much anxiety).

Dropped that, and

Now trying Seroquel, but he didn't do to well on the first day (today). Felt out of it, very sleepy and tired, unable to raise the energy to even talk at Thanksgiving dinner, and still flushing.

I try to counsel him to be patient, and wait through the early side effects.

My question is... How many Parkinson's have these horrible symptoms - burning hot one minute, freezing the next, then severe anxiety and panic?

He is so miserable that making it through the day is a herculean task. His physical difficulties are not that bad, yet.

I am on the edge of praying that God blesses him with a sudden quick exit from this horrible daily ordeal, but I am stopped by the hope that there is something else that hasn't yet been figured out.

Why are these symptoms so much more severe than the muscular ones? We have a good neurologist, who specializes in movement disorders, a good psychiatrist, who co-ordinates with the neuro.

I am having a very hard time dealing with his misery every day, and am getting counseling for myself.

I do not know what else to do. If anyone else reading here has been through something similar with their beloved, please offer me some encouragement. I do not know how he can stand these crushing symptoms for weeks, months, and years ahead.

He is only 72, and has was diagnosed 6 or 7 years ago.

I am interested in the comment above that it might be caused by the Sinemet. We badly need an answer, because his daily life is so bad that he can't even enjoy the grandchildren, Thanksgiving, etc.

I am doing my best to explain it to my son, who understands most of the time, but not all of the time.

I do not blame him, for unless you spend many hours with a Parkinson's patient, it is hard to comprehend how hard their day can be.

And, it doesn't help when the doctors tell the son that it might be psychological, so the son thinks "Mind over Matter", and figures his Dad just needs to "man up"!

Could this be a progression of his Parkinson's that is atypical? If so, what might be next?

By LOHENGR1N On 2011.11.25 00:57
housemouse, I believe many, many Parkinson's Disease Patients suffer from these spells of Hot then cold however if mentioned to Our Doctors some dismiss it because these side-effects of the disease or medication aren't "normally" associated with Parkinson's Disease. Also because of the delicate balance of neural chemicals being adjusted Some Doctors (even "good" ones discount it because we're not thinking right or it's psychological).

Same with anxiety and panic attacks a good many Parkinson's Patient have these Myself included. I don't know if looking at this from another view will help You explain to Your Husband or Son but. If You take a panic or anxiety attack and look at it from what's happening inside the brain when they happen it might be easier (It's not as scary as it sounds). We have an adrenalin surge (triggering the flight or fright response) the brain floods with the adrenalin, then it has to be absorbed back into our system. It's really like a case of the hives. We suddenly have a reaction and we develop welts and bumps on our skin instantly it seems and they can take hours or days to go away. After a panic attack or anxiety attack it takes time for the body to absorb the chemical back into the system. So even though we know or are told everything is okay we still have the extra adrenalin there making us edgy or panicky. And it is easy to work ourselves up to another attack. We just have to try to remain calm and ride it out until the level falls and we start to feel less on edge.

As to is it atypical P.D. and what's next to expect? Don't know nor do the doctors right now, hopefully what's next is the doctors will figure out a dosage of medicine that will help and You will enjoy a plateau of a few years where things will even out and this will be in the past. Have faith, We're all pulling for you and yours. These things can take time unfortunately the patient and caregiver have to live with and through this not the doctors. Hope this helps some. Take care, best of luck and hang in there.

By housemouse On 2011.11.25 01:09
Thank you, Lohengrin, for your encouraging words.

I hope I can encourage my husband to ride these spells out, and see them as just a wave to be ridden.

I asked him if he had ever played in the surf when he was young, and he never had, so that imagery didn't work!

The physical symptoms are not as difficult for him to deal with, but these autonomic nervous symptoms are so much harder to deal with. They seem to last for hours with no relief.

As it is right now, he may only have a couple of hours every day when he is reasonably free and clear of the extreme burning sensation.

We are doing our best to spot triggers, but they are so unpredictable, and once they start, they just don't stop. They are almost as bad as migraines, it seems. (Never had one, but a relative does, and life just stops until they are over.)

How unusual are these symptoms in Parkinson's, and why don't the docs understand that they can occur?

By rmshea On 2011.11.25 09:14
Thanks for the post on anxiety/adrenalin and possible effects on the skin. MIL's face got swollen and red on the one cheek and she kept pressing at it. Reading this reminds me her anxiety is worse at night, she's stressing out because she can't remember/focus..so this might have been what we call a 'hive'..my daughter breaks out in hives when she gets anxious/stressed.

By LOHENGR1N On 2011.11.25 20:17
I'll give you my take on the question; "How unusual are these symptoms in Parkinson's, and why don't the docs understand that they can occur?" More and more as Patients and Caregivers/partners join in the online community and voice their symptoms, concerns and treatments We discover more things in common with Parkinson's Disease. Things that We thought only we were going through or experiencing. Finding out that We are not alone in these cases. Things that we categorized unusual are more common than thought.

With many Doctors it's not a case of not understanding something is Parkinson's related it is or was the case of what They were taught in Medical school and classes. A case of if it wasn't in the book it can't exist within the framework of the disease. A field such as medicine is by those who practice it elite! If you don't have M.D. or the like following your last name then you know next to nothing and should leave it to those who do. I my own experience back in 1986 when I was diagnosed Young onset Parkinson's Disease was almost unheard of. A few years later a Neurologist in a nearby City was conducting a study of Parkinson's Disease and ran an ad in the newspaper seeking volunteers. I called and was asked a few questions then told the Doctor would be in touch in a couple of days. When the Doctor called He asked if I was sure I had Parkinson's? Yes I told Him My neurologist had diagnosed it and the diagnosis was confirmed by the Head of the Neurological Information and Referral Center in Boston at the Boston University School of Medicine. His response was well I've never heard of anyone so young having Parkinson's Disease so I doubt you have it! One would think that being funded for research He would have jumped at the chance to study a case so unheard of to him. No it was a case of it wasn't in his book so I didn't have it. Not even a let me take a look and see myself. In recent years there has been a steady push to educate Doctors about our disease, to get them to listen to Us patients and caregivers/partners. To learn as they go along in the battle that Parkinson's Disease isn't just what was written in a textbook 40 or 50 years ago. At least most Neurologists now know of Young onset Parkinson's Disease. We still have a long way to go but through forums like this at least We learn about our disease and we're not alone that our fears and symptoms are common not unheard of or rare. As we learn we carry this information to our Doctors and sometimes they listen sometimes they don't but we are still teaching them that all knowledge didn't stop at the end of the textbook.

If I can I'd like to relate an experience I had several years ago at My Neurologists office. I have a friend with Parkinson's, We're both about the same age and have this same Neurologist. Now over the years it has come about we have appointments the same day but never did we have them close together. I was surprised to enter the office and see my friend sitting there. He was called in, after he came out it was my turn......I went in to the examining room and looked at our Doctor. He turned toward me and our eyes locked....He look so shaken and sad. Now if you don't know me by now, I'm a wise a**, a joker making light of things....that's how I cope. I said jeez Doc you look like someone just kicked your dog! What's the matter? You two he said, I'm never going to let this happen again! I'm never going to schedule you both in succession! Why I asked, fearing my friend was going downhill and I hadn't noticed. Because I can't help You he answered, I like You both and I'm helpless. All I can do is to watch, just standby and watch....I can write prescriptions to easy some of your symptoms but that's all I can do.....having you both here like today is just too much to bear. I want to be able to say We can fix it, that it will be okay but I can't and it won't and having Him then You right afterward here in this room it's hit me hard.... Hey Doc, We know that, the three of Us know that. We do what we can, We know you're doing all you can, it's alright, really it is....Over these years since My friend and I haven't had appointments in the same week never mind the same day. Where I'm going with this I don't know other than trying to explain why I'm here on the forum, why I'm online typing trying to help. Because that's all I can do, like My Neurologist I can't fix this problem all I can do is watch the endless parade of friends met here and other boards and sites pass along. I can help with symptoms and worries but that's all. I do hope in Your battle You are lucky enough to find a Neurologist like mine. Perhaps this is why I'm so adamant P.D is recognized as a fatal disease, so others won't be blind sided with that truth later on, finding out they've been mislead. Because of my Neurologist, my friend and all of you this is why I'm here trying to help with full knowledge that someone sometime will read my posts maybe look forward to the next ones until the day they stop and hopefully the impact I've made will be enough for them to start up where I leave off and battle on. Until that day you aren't rid of me I'll be here battling along side of You We're all in this together. Take care, best of luck hang in there and be nice to each other.

By poppadum On 2011.11.26 19:05
I sometimes get panic attacks but they are not a side effect of medicines.My GP told me to breathe into a paper bag because the cause is supposed to be an intake of to much oxygen due to too rapid breathing. I usually carry a paper bag in my purse. Failing that I grab any plastic bag, even a shopping bag when I'm in a store, but then I roll it to reduce the size so it is not too large, or I even hold my cupped hands in front of my mouth and try to breath very slowly. Because it's a frightening experience it takes a bit of practice in the beginning. The main thing is to try and stay as calm as possible and slow down your breathing by concentrating on it. Keep in mind that it WILL pass!

By parkinit On 2011.11.27 15:18
One thing i just thought of and to confirm whether it is a drug causing the burning sensation or something else is to have your spouse take a "drug holiday" under strict doctor's care. I understand that those who do this are removed from all their drugs while in the hospital and slowly they could be reintroduced until and if the one causing the burning is found. Just a thought and it is drastic, but it sounds like you two are at the end of your ropes and would welcome some possible relief.

Hugs,

By belen webb On 2011.11.27 18:37
hi housemouse,im sorrry about your husband i havent see this to my husband with pd so i dont know what is this,if i know something i will let you know ,for now be strong for your husband and takecare yourself i will pray for you and your husband,godbless.

By housemouse On 2011.12.05 23:45
Thank you for your prayers. His neurologist is now increasing his Sinemet to see if that will help.

I am struggling with his emotional problems, which are so unusual for him, and failing at doing much to help him.

There are so many moments when I pray that God will take him quickly, because it hurts me so much to see this wonderful man become so crippled and destroyed by this horrible disease.

Then, the guilt for not being able to do more for him sets in.

By chroop67 On 2011.12.06 00:24
My mom suffers to from horrible anxiety attacks and the hot flashes.To me they are worse than the mobility issues. She is on several meds (see my medicinal marijuana post). I get many phone calls from her quite agitated and she also has delusions and hallucinations. Sooooo frustrating, off to the doc on Wednesday for answers...........maybe.

By phoenix On 2011.12.06 22:31
hey housemouse, I hear you. I'm new here, haven't posted before, My husband too is a wonderful sweet man who has changed so much. I'm so often not sure I can keep doing this but I guess we just have to keep trying. Good to know I'm not alone.


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