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Amanda Thorpe

Seasons of loss

21 posts in this topic

After the doctors figured out that I have labile hypertension plus orthostatic intolerance, and severe insomnia, treatment and lifestyle modifications for those things somehow miraculously cured my daily migraines.

 

I am still susceptible to migraines that can be triggered by other things, however, I sometimes wonder if it isn't that the migraine hasn't already started and thus it seems as though the beat of the music or the harsh light or whatever is the trigger. Which came first, the chicken or the egg? I never know for sure what I can get away with that impacts fatigue, sleep, or migraines. All I know is that I need to be enormously flexible, with both my attitude and my schedule, so that I can accommodate the ups and downs as gracefully as possible.

 

I also found that it helps me not to talk about it or explain in endless detail to my spouse or others what it is like, in the throws of it. So I use the term "boots up" to let Gene know that I am down for the count, for whatever reason at all. For example, if he calls and asks how I am doing, I'll often say that I'm dynamite, but boots up, which means I am holding my attitude steady but that physically I am laid up, in bed, and down for the count. With those code words, he knows to move into adjustment mode and fills the gaps with whatever still needs to get done, such as mailing out awareness bracelets, bringing medications, fixing dinner, or whatever else it takes.

 

He appreciates not being burdened with the gory details, I appreciate not feeling obliged to explain so my mind is free to contemplate all the things I'd love to do when I feel a bit better, and life goes on as though it is the usual, and it remains just a little blip on the radar screen of a life permanently adjusted to health's ups and downs.

 

Many years ago, I encountered one of my neighbor's little boys sitting on the stoop outside our apartment building, quietly playing with his toys. I asked how he was doing, and he cheerily said, "I'm very happy but this is NOT one of my mom's GOOD days." Which is what our loved ones must surely be able to relate to, much of the time!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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When first diagnosed with scleroderma I would wake up on a morning and be thankful that at least I didn't have a migraine...now I am thankful to just wake up on a morning! :emoticons-yes:

 

There's always some good to be had out of the day (as in a 24 hour period of time) it's just that our appreciation of what to appreciate needs adjusting to accomodate the somewhat alternate lives we lead thanks to chronic illness. Hey, how many people would be excited to have vacuumed the downstairs on a Monday morning? I was last week let me tell you, I surely appreciate the "simple" things in life these days and I intend to continue doing so! :terrific:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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You Gals are THE BEST :emoticons-clap: I want to print off these posts and take them with me when I go back to my general practitioner in a week or two. So many things each of you have said are just what I have experienced since my very first migraine in November 1966. How's that for memory!! Just shows how significant an occasion it was. I will never forget it. Ian and I were living in a bedsit in Leicester (Anstey to be exact) and decided that day to drive to Nottingham to have a look around. We had only been in England since August that year so were just starting on our weekends of sightseeing. I couldn't figure out what was wrong. I think it took 10 years before anybody said it's migraine and gave me an appropriate medication.

 

Shelley you talk about labile hypertension - that's me but I have never heard the term orthostatic intolerance. Am off to look that one up the moment I get through with this.

 

Oh the joy of talking to people who understand. :emoticons-line-dance:

Better get off now and have my panadol and some breakfast.

 

Love and hugs from

Judy

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Shelley,

 

I looked up Orthostatic whatsit - seems to me that may be why I have to keep sitting down every few steps when I get up in the morning. Maybe it is why my legs threaten to let me down (literally) when I get out of the car and all sorts of other things that happen that puzzle me.

 

When I have talked about those things the only person who has responded was a cardiologist, years ago, who had me lie down for a few minutes then stand up and measure my blood pressure. His opinion was that it didn't drop significantly enough to make any difference. I think I just might do a bit more following up on that one.

 

Well that should just about fill up my week on top of all the other things I was planning to do.

 

Warm Hugs and thank you,

 

Judy T

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Hi Judy,

 

I had a bunch of neurological testing, including a Tilt Table test, to diagnose the orthostatic intolerance. In fact, I think that was the key, definitive test for it.

 

One of the ways that I manage it (there are a bunch) is that when I get this certain feeling (like an elevator dropping rapidly), I sit down immediately, no matter where I am and no matter what it takes. If I don't, I run the very real risk of passing out cold.

 

My husband has learned to take it completely in stride. It's more likely to happen in stores (from standing or just being upright too long), in which case I usually have to plop right down in the aisle. Other shoppers tend to look startled by it, but my husband merrily assures them that it's okay, "She does this all the time!" As though it's just another one of my quirky hobbies. :emoticon-dont-know:

 

Another method is to use wheelchairs and shopping "carts" for long distances, but after I infamously knocked down the Walmart glue gun display once, I tried to change gears in favor of just plopping. That way I get more exercise and incur less shopping display damage, so everyone is much happier overall.

 

Although I joke about it, it can be quite an impairment and put a big dent in lifestyle. It is worthwhile getting it diagnosed, and properly treated, as well as making lifestyle changes (get up slowly, eat salt, drink plenty of fluids, avoid certain meds, try to avoid situations that trigger the worst of it) having back-up plans for it, when all else fails.

 

Also, I think some people get orthostatic intolerance as a side effect of aging and certain medications. For me, I'm pretty sure it hangs around with my labile hypertension, as sort of the flip side of my blood pressure being simply dysregulated (both high and low and changing rapidly). They explained to me that repeatedly tripping the orthostatic intolerance can be a significant cause of fatigue, too, so just ignoring it really isn't an option.

 

Good luck to you in dealing with any issues related to it. Keep us posted on how it goes!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Shelley

 

I have just read your latest post on this thread and had a little giggle. I have a cousin who is in a wheelchair, she has post polio syndrome which comes on in later life very much like Motor Neurone Disease. Anyway I have always been quite happy to go out with her - until lately, I don't think I could even push her chair now - and we have had lots of fun over the years. I have always been very good at taking her into shops where there are things we want to look at, usually clothes as you can imagine. Some shops have no idea how hard it is to get around their displays until yours truly bowls down the aisle with the chair and boomp, boomp, boomp go the goods. Well, they should think about what they are doing when they set them up shouldn't they!!!!

 

I also understand how Gene feels when you go plop down in the aisle. My husband Ian is very good at fainting (syncope) at the drop of a hat. I react the same way as Gene - Oh don't worry he often does that!!!! Trouble is people often call an ambulance then we are hooked into the whole hospital visit thing. It was great one time when he fainted on an aircraft half way between Auckland and Brisbane. We were en route from NZ to Sweden at the time and all the time we were with Qantas we got right royal treatment, then once we left Singapore with Alitalia they couldn't care less!!! But it was fun while it lasted.

 

I have an appointment tomorrow with my general practitioner, I am still on this step by step programme back to getting on the right meds and the headaches are driving me crazy. She (GP) doesn't really want to see me yet, it is too soon after the last step in my meds, but I had such a terrible weekend that I just want her to know about it!! I took 5 doses of Migraine med. which knocks me around. Then on Sunday evening when we were waiting in a cafe for a meal I was caught by the most violent vertigo and just had to sit tight with my eyes closed and try to decide whether I was going to throw up or fall over. Needless to say the staff in the cafe packed our meals in takeaway boxes and ushered us out double quick.

 

I don't really think I have Orthostatic whatsit, even though I often have to sit down. I have never fainted or passed out in any way and when I have tested my BP while I am feeling weak it is often actually high not low so go figure. I have been thinking about it quite a bit since we last talked about it and I think it is just ME. The tilt table test sounds a bit like the test they use for BPV (benign positional vertigo) I know I get it but nobody has been able to bring it on in a test.

 

AH well!

 

Nice to hear from you.

I will see how I go.

 

Judy

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