How have you been? What treatments are you doing? What medications are you on? What is next for you??????’s Those questions have to be the most popular ones I hear when talking to people. I don’t take any medication besides baby aspirin daily which is only 81 miligrams. Right after the hospital I did take dilaudid for pain and meclizine for dizziness. I got off of both after about 2 weeks. The dilaudid didn’t do jack and my dizziness had subsided to certain body movements. I later took percocet which is no joke! It was about 5 weeks after being in the hospital after the stroke that I was prescribed percocets strongest dose. That was the first time the pain in the back of my head was completely gone after 60+ days of having it. After 3 days in a row, I stopped taking the Percs (if you ever have you know why I quit) and the pain stayed away for about a month or so. From then till present I still have a head pain towards the back. The interesting thing is that it is NOT in the same place it was previously. It’s a new consistent spot! It’s not as intense at all either. It’s closer to the crown of the head and slightly left. As before, it was the base of the head and slightly right. I am about 7 mons. post the stroke and still deal with these pains. Now, some neurologists have placed it as a back lash from the stroke. Come on Buddy…. Come on. This was the major symptom prior to the stroke and the same feeling existed after the stroke. Now it has just moved a bit. No speculating please! A simple, I don’t know is suffice.

Next steps and treatments??? Great questions. They are difficult to answer because I have not been given a treatment or planning steps. Sure, I have a strict Olympian diet (they fail drug tests though too) & work out regularly which helps maintain low blood pressure, cholesteral, & low impact on my heart. Plus the many multiple benefits that exercise brings you. How can I get on a treatment when there has not been a diagnosis given??? Plus many Dr’s. just don’t know & when they see the many tests that come up neg. I usually get a response of them telling me how healthy I am and should just live my life. Well….. when your dad dies at 65 from stroke, your uncle at 38 from a stroke, another uncle at apx 34 of cirrosis of the liver, your sister with APS, your grandpa at 43 from ????, and your grandma had several heart surgeries, sorry if I just don’t wanna except that brush off response. Cardiovascular diseases, issues, complications, etc run unfortunately heavy in my fathers side. Yes, that is all my father’s side. My mother’s side are all legends!!! They live into the 90’s as sane as can be. I am kinda hoping my internal battles can be powered with the Kiel side rather than the Orr side:)

I was just introduced in Fibromuscular Dysplasia.

Fibromuscular dysplasia (FMD) is a condition in which at least one of your arteries has an abnormal cluster of cells growing in the artery wall. This cluster causes the artery to narrow, which can cause damage to the organs that receive blood through the narrowed artery. Fibromuscular dysplasia can cause a number of complications, such as high blood pressure and aneurysms, if left untreated. Fibromuscular dysplasia appears most commonly in the arteries leading to the kidneys. Fibromuscular dysplasia can also affect the arteries leading to your brain, abdomen, arms, and legs. While there isn’t a cure for fibromuscular dysplasia, it can be treated effectively.

If the arteries to your brain (carotid arteries) are affected, you may have:

  • Dizziness
  • Blurred vision or temporary loss of vision
  • Ringing in your ears (tinnitus)
  • Neck pain
  • Chronic headaches

Premenopausal women ages 14 to 50 are most likely to develop fibromuscular dysplasia, although older women and young adult men also can develop the condition. It’s believed that fibromuscular dysplasia has a genetic link, although researchers don’t know what genes could cause the condition. Tobacco use (Which I used to do) and some medications may cause irritation in an artery, and cause the changes in blood flow to become more severe.

Fibromuscular dysplasia can cause a number of complications. These include:

  • High blood pressure. I don’t have!
  • Chronic kidney failure. I don’t have- That’s a given
  • Dissected artery. Much evidence leads to a possible dissection, but nothing concrete. PLus I had a TIA after the major stroke on June 24th.
  • Aneurysms. My father had one & it’s possible my uncle as well.
  • Stroke. If you have a dissected artery leading to your brain or if an aneurysm in an artery to your brain ruptures.

Learn more about Fibromuscular disease from cleveland clinic. One is about to open in Las Vegas which I will plan on becoming a patient of.

Learn more about Fibromuscular disease from the mayo clinic.

The best tests are ones that I have had. Duplex scans of carotid and vertebral arteries, MRI’s & MRA’s CTA scans. I have had probably 7+ Dr’s look at my tests and this has never came up. I do not know if it is something easily looked over, but from what I have read. One of them should have noticed a narrowing or bubbling in an artery. If thats the case they are missed…….. Do I have a case?:) Ha

So, my treatment??? I’ll get annual less evasive scan tests done and continue on my strict diet of no caffeine, no alcohol (low moderation), low salt, no red meat, & low sugar. Continued talks and research of my own & of course feed off the mounds of support sent my way by so many of you.

-Sabin

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