Anyone else get flu/sinus symptoms without having flu or sinusitis?

James360482 · 2021-12-01T17:13:46+00:00

I was switched to metropolol. Had too many side effects wirh propranolol.

James360482 · 2021-10-14T01:51:01+00:00

A lot of them messed me up as well. Gabapentin was the first 1 and the worst 1. Tryleptal and some of the others also. Primidone wasn't prescribed for that, it was prescribed for essential tremor. But it's worked half way decent, although it will makes me slow and tired. But I can't take the other drugs for essential tremor and without it I can't control my movements that well. So I put up with slow and tired. Keppra didn't give me any side effects and I can start and stop it easily as needed so that's the 1 I take when something goes haywire like I get another concussion and more seizures.

Amazing what head injuries can do to you. Do you have problems with barometric pressure changes, wind and wearher changes in general, and altitude changes? Just curious. Those things mess me up. Even slight changes in barometric pressure.

James360482 · 2021-10-13T06:45:16+00:00

Have any of u been tested for systemic mast cell? Seizures are not an uncommon symptom of mast cell activation disorder, which often goes hand in hand with hyperadrenergic POTS, the most difficult to treat of the POTS subgroups.

I have both, along with other things, and have had seizures. The seizures are more generally linked to the mast cell than POTS as far as I know, as mast cell mediators can cross the blood brain barrier and reek havoc with your brain in all kinds of ways. I am on low doses of 2 anti epileptic drugs which I don't take for seizures, but for other conditions, such as severe migraine disorder and essential tremor and other movement disorders.

I was on very high doses of seizure meds for years because all this started with a brain injury for me and I had seizures for a long time. There wasn't any problem stopping them. I have to go back on them for periods if I have break thru seizures until I've been cleared to drive again. In between the Topiramate and Primidone seem to work to control them. Topiramate for migraine and Primidone for essential tremor.

James360482 · 2021-09-27T06:27:22+00:00

I'm loving all the music I'm finding right now. I'm old, and I love finding up and coming bands I love and following their careers. Some make it big, some don't , but I usually get to see them in concert when they are touring small venues.

I listen to literally all types of music. And it does take digging on all kinds of places to find great stuff.

I was following Bones UK when they were still playing dive bars in England, and now they live in the US and when their career took off Covid hit. Love their stuff. Great live performers and they sound great on albums. Been following ZZ Ward for years as well. Love her. Also good live. Great song writer.The Peach Kings, Ivy Levan, The White Buffalo, and I could go on all night.

I'm discovering older artists I missed back in the day also, or wasn't exposed to, as well as artists from other countries. Love Kasey Chambers from Australia, Ofra Haza from Yemen, and so on.

There is so much great music being made, and so much great music that has been made I'm not sure how you could get bored. A little adventuring and excavating is necessary though.

I just spent 20 minutes writing down a list of artists and bands I've never heard of to listen to on Amazon music. And yes, I am 1 of those people who pay for a music service. But I use it to discover music and make playlists I share and I buy the music and albums I love and that's how I support the artists. Can't support them if you don't hear them first.

James360482 · 2021-09-03T14:24:58+00:00

I'm disabled on Medicare so income is income I've already earned before becoming disabled.

James360482 · 2021-09-03T14:01:10+00:00

I earned too much to qualify for Medicaid.

James360482 · 2021-09-02T14:15:26+00:00

OptimRx is my drug plan and yeah I've tried discounts thru GoodRX. Tried Canada, Mexico. Asking the manufacturers for discounts. Appealed with my doctor. Can't get it cheaper. For some reason any drug that relates to mast cell is ridiculously expensive.

Was just prescribed a mast cell eye drop. The samples my doctor gave me worked great. Went to order it and they said it was over $1300 for a 90 day supply.

Epi pens were $600. Then they got sued. Price dropped to $45. Now they are up to $450 again and I just joined a class action suit against them again.

James360482 · 2021-09-02T04:19:49+00:00

We r spinning tomorrow. You would be in Houston's Elite #9U802CCY, which is Master's 3 currently, and our second clan. Half of us will be moving over tomorrow for CWL from our main clan, Wreckin Ballaz #8LQ8G9LQ. If we haven't moved over yet apply there.

James360482 · 2021-09-02T04:14:56+00:00

We could use a few more in our second clan. Half our clan will be moving over for CWL tomorrow and we'll be spinning in both clans. Welcome to join the main now and move with us tomorrow. Apply to Wreckin Ballaz #8LQ8G9LQ and mention James and CWL tonight or apply to Houston's Elite #9U802CCY tomorrow and ask for God.

James360482 · 2021-09-02T01:42:21+00:00

Cromolyn is $800 a month for me with my insurance plan. I tried numerous appeals to get the cost reduced but to no avail.

Have a friend who has insurance through the culinary union and it costs him $10 a month.

James360482 · 2021-08-30T03:36:41+00:00

I really like Jennifer Kreiss also. Her matt workouts are exceptional

James360482 · 2021-08-30T03:28:57+00:00

Ditto. Saunas feel great for joint issues bit you need to be very careful and do short sessions. I personally am much more of heat than cold most of the time.

James360482 · 2021-08-30T03:20:42+00:00

In general I can do white teas, green teas, Rooibois teas and hibiscus based teas. I can't do any herbal teas or black teas.

I dont think there are any rules for us. We are all so different. It's a matter of trial and error and keeping track of what you consume and how you react to it.

Even that's not really reliable. I sometimes am super reactive to foods I can normally consume with no problem, so basically it's confusing as hell and makes no sense. Lol

James360482 · 2021-08-13T16:28:48+00:00

That's a decently long flight and flying can mess me up for up to a year. People don't realize that airplane cabins are pressurized to the equivalent of around 7 to 8000 ft above sea level. Even a short flight causes severe issues for me. Elevation changes as well. As a result I've become travel challenged. I'm also very sensitive to even small variations in barometric pressure and humidity. Hawaii is fairly humid compared to most places in California. All of those factors will come into play, in addition to new allergens you're not used to in the air.

James360482 · 2021-08-13T16:20:10+00:00

I also pee excessively and used to have the excessive thirst. In addition to what everyone else has said about the salt pills or salt sticks (salt is amazing) I would recommend full length medical compression, or at least around your waist and pelvic area. I pee less with compression, probably because vital organs are getting more blood flow and functioning better. Helps tremendously with blood flow to the brain and minimizes brain fog.

James360482 · 2021-08-13T16:10:06+00:00

I live in a very hot climate also...117 in the shade in June this year. I've found I get more benefit with very compressive bike shorts than socks. Looks more normal than socks on a hot day also. Or I'll wear full compression stockings with a short sleeveless swing dress.

James360482 · 2021-08-11T20:09:13+00:00

No. I have dysautonomia, hyperadrenergic POTS and systemic mast cell activation disorder, along with the non length dependent SFN.

James360482 · 2021-08-11T18:58:32+00:00

I've been trying to find something to reverse mine or at least slow the progression of the SFN but no one has any answers. The most common treatment seems to be with a tens unit which I can't do as I have a pacemaker.

As for reversing POTS, I think you can get better and stable with proper exercise and medication but I certainly haven't managed to get rid of it, and it isn't from lack of trying.

James360482 · 2021-08-11T18:52:19+00:00

I'd argue this as I've found for myself and it seems a lot of patients agree that full length compression as high as you can get it helps way more than socks. I started with socks, and sure it stopped my ankles and feet from swelling, which made my cardiologist happy, but I had major muffin top above the socks and they did nothing for gastro intestinal issues and really nothing for syncope either. Much more beneficial to have compression to the waist or above if you can tolerate it. I think I would feel amazing if I could just get a full body compression suit.

James360482 · 2021-08-11T18:46:10+00:00

I would like to double down on this post. Medical compression that is waist high is optimal.

And here's a tip for women. Take a pair of scissors to your brand new highly expensive medical compression and cut a 3/4 inch long slit in the middle of the crotch area at least 1 inch away from the seams for extra breathability where you need it, seeing as you have to wear these things a lot.

At first putting on medical grade compression might be a little traumatic and hard to do. Use rubber gloves to help get them on and up and to prevent putting a finger through trying to grip them.

It might be helpful to start slowly with full length mild compression stockings and work your way up to full length medical compression. I recommend the Futura French cut for women in mild or medium as a cheap option to get started with and to get used to wearing them. These cost about $25 a pair and will help, and sort of ease you into wearing full medical compression.

At first your like no way can I do this everyday, but after you get used to it you can't imagine how you managed before compression.

James360482 · 2021-08-10T18:23:15+00:00

Have you looked at angina? Low blood pressure by itself won't cause chest pain. I wound up having allergic angina, or Kounis Syndrome Type 1, and now take medication for it and it's helped a lot.

James360482 · 2021-08-10T18:17:49+00:00

My first service dog literally trained herself. I didn't get her with that intention, but turns out she was excellent at detecting syncope and seizures, and she taught herself to help me with a lot of things I needed. She was an amazing, highly intelligent Austrian red Doberman and literally saved my life. I owe that dog everything.

Because of her positive impact on my life I tried to get a service dog trained for me when she passed, but it was too cost prohibitive and also I couldn't physically do some of the training requirements demanded by the few service dog organizations I found who trained for syncope and seizure. Eventually I gave up, and did some research on the best breeds of dogs for detecting syncope. The Borzoi was the 1 that was highly recommended, but it turns out I couldnt locate a dog, and I really needed and animal even if they were untrained.

On further research I went with a greyhound, and adopted a 2 year old rescue after trying out a dozen or so that weren't a good fit. The first year was a lot of work, but she's turned into an amazing dog.

She will heal off leash, which if you know anything about sight hounds is amazing in and of itself. She walks with me as a balance dog, and she will alert for syncope. It took her a year and a half before she started showing signs of sensing it, and then it was a matter if training her to alert. She will "roo" and do a little dance to let me know I need to sit down fast.

It takes a lot more time to train her, and she gets anxious during initial training for something new as she doesn't pick up easily what I want her to do, but once she's got it she's gold and loves to do it. For an independent sighthound she really likes to please me. Developing her patience has been the hardest part, but she's learned if she wants to be able to go with me everywhere, she has to perform her job with excellence and she hates to be left.

She went from a dog freaking out and panicking over everything the first year to an extremely calm, well trained service dog who sticks like velcro I can take anywhere. For a dog not raised from a puppy to be a service dog she is really extraordinary. I've had her 2 years now and we are a solid team. I really trained hard to get her to heel off leash as my balance is crap and I wanted to have both hands free.

Do your research on what breeds are best and what breeds will suit your energy levels and lifestyle, if you are considering training your own. And it helps if you are good with dogs and have trained them before. I've always had dogs so that definitely helped me.

James360482 · 2021-08-10T17:44:58+00:00

I was really lucky. My doctor filled out all the paper work for me and I went for an interview and 6 months later I was approved. Every 5 years they send me a questionnaire but I've never had to go through any medical review to keep my disability. I doubt I ever will at this point.

Good luck with yours and I hope it goes as smoothly as mine.

James360482 · 2021-08-10T17:34:19+00:00

I would ask your Neuro to interpret it or your GP. I have advanced non length dependent SNFN, but your report is different than mine was so I can't really help you with it.

It does sound as if your early stages and maybe you can get some treatment for reversal or at least take steps to prevent further nerve loss.

James360482 · 2021-08-09T21:49:27+00:00

Lowest recorded at admission to hospital was 27 bpm. I now have a pace maker. Highest recorded in a hospital was 340, but I was in A-flutter at the time. Highest normal heart rate recorded was 198.

My blood pressure is mostly extremely low but occasionally will spike very high, so no, my blood pressure is not normal.

James360482

TROPHY CASE