Fibromuscular dysplasia (FMD): Want to connect

I have fmd in both carotid arteries, the basilar artery that goes up via the brainstem and one more cerebral artery. Unfortunately, I don't know anything about a possible for me aneurysm or degreed of stenosis, only irregularities in the walls and increased musculature. Getting no answers from follow-up doctors. Am a nurse since 1981, live alone, if I don't have time to raise the alarm, no one will find me, want to plan for my life and my pets but get no answers. Is well read in FMD.
I had several attacks this summer of rotational vertigo, tinnitus, vomiting and imbalance even when watching, when I close my eyes had imbalance since 2015. Had a TIA last year. Has a daily headache, nausea, imbalance, tinnitus in the left but briefly also in the right ear.
Am very tired. When I got my rotation vertigo I couldn't see as it was spinning so fast, crawled to the toilet to vomit could last for 6 hours but the symptoms for 5 days, after the last one I still have all the symptoms. No symptoms before other than imbalance.

I was told I have FMD-fibromuscular dysplasia- in the renal arteries maybe 5 yrs ago, pearl-like arteries, but no symptoms with that really. More concerned about the aortic aneurysm and brain aneurysm and just tortuous arteries. Aortic is 4.4 and possibly surgery would be 'considered' at 4.5 due to FTAAD Connective Tissue (LOX Gene Defect discovered, also) Just work at keeping blood pressure down and scans every 6 months.

Thank you- I thought I posted on the wrong one but then couldn’t remove it

@JustinMcClanahan

I have Fibromuscular dysplasia affecting mainly my neck veins. I have not had any symptoms for a long time. I take a low dose aspirin daily per Madison WI specialist. I have also had scans to check my other main veins and all is good. I do not have leg or other pain.

Hello @marie1956, you commented on fibromuscular dysplasia, have you been diagnosed with this? Do you also struggle with leg pain as a result?

I'd like to invite @parrot53, @lpyne, @stpaulpoet52 @queenkeb @geechiegal @jwillits8 @jayhawk57 all have talked about fibromuscular dysplasia as well and may have some experiences to share with you as well.

I have been thinking about you. It occurred to me that fish oil or flaxseed oil tablets also thin your blood. Perhaps you could ask your doctor if one or the other might be a good substitute for aspirin since you are allergic to it.

@lpyne, I moved your post to the Stroke & Cerbrovascular support group and the Heart & Blood Health support group. I'm also tagging fellow members like @stpaulpoet52 @queenkeb @geechiegal @jwillits8 @jayhawk57 who have experience with fibromuscular dysplasia (FMD).

If you would like to seek a second opinion at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

@lpyne, how are you managing your dizziness and headaches?

fibromuscular dysplasia

I just found out that I have fibromuscular dysplasia also. I now have 3 aneurysms two in my head and one in my lower heart. https://www.inspire.com/groups/fibromuscular-dysplasia-society-of-america/discussion/severe-leg-pain-with-fmd/ Try this might help

I forgot to say, sorry that you can’t take the aspirin. That really helps with the headaches. I also take a beta blocker due to portal hypertension. I am lucky that I do not suffer from dizziness. Hoping you can find an answer for that.