(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@katemn Katherine, your comments about migraine piqued my interest. I had terrible migraines through my adult life. They finally started abating pre-menopause and finally went away with menopause. My daughter unfortunately inherited them from me. During my mothering years I was afraid to see employment because I would be missing work at least 4 days a month from them.
What have you taken for them? My daughter uses imitrix which absolutely does help but something preventative would be great. I was an ergot for a while but that upset my stomach that it was as bad as the migraine! Then one doctor put me on phenobarbital -- 5 a day! That didn't help, so I just had to suffer until menopause. I am curious to know helped/helps you so I can tell my daughter. Oftentimes when she has one she will call me because sometimes just talking helps and she knows I understand.
JK

@contentandwell, JK, I still take Imitrix with me when I travel .. barometric pressures etc affect me .. but I RARELY need that standby!

Below daily preventives are what works for me: My understanding is Corgard is for heart and Topamax is for seizures BUT the side effect is that they help migraines. Two things .. my best friend also has migraines .. neither of these prescriptions help her! Different body chemistries. BUT I would also say .. Topamax has been heaven sent for me! Topamax has helped me more than any other med I have EVER tried! I have had migraines since childhood .. REALLY bad around my periods. Was SO hoping they would depart with menopause .. no luck .. ZERO improvement to speak of! Not everyone would want to take preventive meds daily .. BUT if they suffer ENOUGH from migraines .. they will! That is WHY I researched and sought out Homeopathic .. the LESS meds I could take into my body .. I felt the better! I hope this may be of some help! Hugs! Katherine

CURRENTLY daily: Nadolol (Corgard): 20 mg in pm and Topamax: 50 mg in am and pm
PREVIOUSLY daily: Nadolol (Corgard): 40 mg in pm and Topamax: 100 mg in am and pm

I know you asked Katherine this question, but I have suffered with migraines since I was eight years old, and I am just shy of 70, so that's a lot of migraines. I was finally prescribed a beta blocker, but since my blood pressure is low, that was not a good choice. Then a doctor prescribed Elevil which I took for over ten years. It was a Godsend for me. When I went through menapause the migraines became fewer and further between each previous one. I don't take it anymore because I am on other meds for neuropathy and, of course MAC, but Elevil was truly a migraine "fix" for me! Anyone who has suffered through headaches gets how much a person's life can be controlled by them. Anyway, Elevil was my drug of choice. Hope this info helps. I am sorry your daughter inherited them. So did one of mine and one grandson!! Genetics is highly over rated! 🙂

Is there a way to edit things you have posted? I just noticed all the errors/typos in my last submission.
JK

@katemn Katherine, I too had migraines since my teens, I realize in retrospect they started shortly after I started menstruating.

I had nadolol when I had cirrhosis because I had some slight esophageal varices. The nadalol made me so sick I had to get off of it. They told me that was at my own risk but I knew the varices were very small so I decided it was worth it. Of course one thing that happens when you have cirrhosis is that you become less tolerant of drugs. Due to Barrett's esophagus I was put on a PPI. It really bothered me. The doctor tried about 3 different ones but I ended going back to omeprazole (prilosec), it bothered me the least. This all happened prior to my cirrhosis diagnosis.

Now I take 40 mg of omeprazole a day to counteract some of the immunosuppressants and am not bothered in the least. Hopefully that dosage will get reduced at the one year mark. I have read that Alzheimer's can be associated with PPIs. "Proton Pump Inhibitors Linked to Dementia" http://www.medscape.com/viewarticle/858909. That is extremely scary to me, particularly since I have two other risk factors -- diabetes (thankfully mild with no meds), and a hearing loss.

I agree, the fewer drugs the better. I never in my life thought I would be where I am now, taking numerous drugs. I am happy just to be here though so that makes it tolerable.

I will email your info to my daughter. Maybe it will help her.
Thank you.
JK

@irene5 Irene, thank you for your response also.
I have heard that beta blockers help migraines, someone I knew "way back when" was taking them and magically their migraines disappeared!
I think she may be on an anti-depressant, she does have some other issues - long story there. I will mention this to her too.
I know my life was very controlled by them. I will always remember how my son, in early grade school, would try to keep his sister quiet and from bothering me when I had them. He would do anything to keep the peace with her. He is still that type of guy. He has gone from being very difficult in HS and college, to being very caring, back to his original persona.
JK

@contentandwell, JK .. re: editing .. I always read my posts before I hit send! Hugs! Katherine

In answer to the GERD question, I do not get that. I am trying to use no dairy and as little wheat product as necessary. I have stopped eating bread and cereal. Really miss the yogurt and ...ice cream! I am hoping that will help. I am going to to back to taking NAC. It is supposed to help clear and was recommended by one doctor so it is safe. I think when I used it before I did not take enough every day to help with my health. You are supposed to take one three times a day. I took one once a day. And it should take a few months to work.

Totally off this subject, but something I read , wrote in this group, but it got lost somewhere, when you take levoquin, which many of us do, you should eat something with it always. Also, we are told not to take antacid within 2 hours, but apparently we should not take anything within 2 hours. Even a daily vitamin can affect the levoquin. I did not know this before and i use levoquin probably twice a year. It is my go to for infection, while carefully watching for bad effects. so far, so good. anyway, just a tidbit of info.

Thank you for the response. Have a great day. Fondly, Mary Jo

@katemn, I always do too but somehow that one got by me. I must have gotten interrupted or something. My daughter is a writer and I used to proof read for her!
JK

You always help! Thank you. I get botox injections in the head every 3 months for migraines. Not even sure if it helps. Now to find a local practitioner. Terry