Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Prinzmetal/Medicine Prescribed-Comparison

MoonFairy13
1 Recommendation

I was just thinking it would be interesting to find out what everyone is taking for their Prinzmetal. I am thinking that we are going to find that there is a lot of different drugs being prescribed for the one disease. I have heard a lot of people talk about certain drugs they are taking, nothing I have ever been on though. I know each person is different but I was thinking that there are so many who have medicines who are not working and others who have found a drug or drug combination that is working great on keeping the spasms down.

I thought that perhaps it would help if we knew what everyone was on, even drugs for stress and depression with it, anyone taking hormones which I was told immediately I had to get off of because they feared I would have a stroke or blood clot. Just thinking that since the doctors we deal with a lot of times don't know a lot about this disease, WE could help each other. Not by telling anyone what to take, but at least we would know other drugs that could possibly help if we are not being helped by what we're on.

I have also read where some are being helped by taking Omega fish oil, Mag., Potassium, and some other vitamins so be sure to include any of those that seem to help. Of course, even with vitamins and minerals we must use good judgement or consult our doctors.

I have a feeling we are going to see where different people are being treated differently and it would be nice to know what is working for who.

Also, perhaps add if you have had a positive diagnosis for Prinzmetal by cardiac cath or from the testing at Jewish Hospital in Cincinnati and if you were born without the gene to produce Nitric Oxide and are taking the L-arginine.

Just thought this might be interesting and helpful to those who have Prinzmetal. Anyone is welcome to add their symptoms for others who are going through the phase most of us went through where we didn't know what we had but knew something was terribly wrong. I would have given anything to have read something about the symptoms and someone who had been diagnosed when I was going through it. You can bet I would have grabbed the doctor by his pretty little tie and said, "test me for this right now and stop telling me it's a female problem or nerves and anxiety" LOL

So typical and I am sitting here half laughing. I have been up all night with spasms and am now getting so sleepy I cannot keep my head up so I am going to have to lay down. I will have to add my own lists of meds when I wake up. Yes to all those wondering, this fatigue is all part of it too unfortunately.

Be back in a bit to record my Prinzmetal fact sheet.

Blessing,
Indiana Dee Marie

Explore topics in this discussion:

Plavix Anxiety Niacin Menopause Tofranil Stress Toprol XL Depakote Protonix Allergies Simvastatin Stroke Lortab Blisters Hypokalemia Wellbutrin Metoprolol Nifedipine Celexa Pravastatin Procardia Nexium Baclofen Ataxia Verapamil Pneumonia Cardizem CD Norvasc Folic acid Xanax Cardizem Triamterene Aspirin GERD Imdur Seizures Sweating Pain Heart attack Heartburn Depression Nifedipine ER Prilosec Acyclovir

18 replies

tonyam

Hi Dee Marie,

Ok my medicine list:

Toprol XL 50mg (arrhythmias, HBP)
Verapamil CR 180mg (PA, migraines)
Imdur 60mg
Aspirin 81mg
Depatoke ER 500mg 2x/day (seizures, migraines)

I used to take Procardia but was switched to Verapamil for the added migraine benefit, as that's my most pressing problem right now.

Be Well, Tonya

P.S. I'm originally from Indiana, Mooresville.

MoonFairy13

1. IMDUR ER 60 mg
2. CARDIZEM CD 240mg
3. PRAVASTATIN 20MG
4. DEPAKOTE 500mg
5. TRIAMTERENE 37.5mg / HCTZ 25mg (to get fluid off)
6. ASPIRIN (4 baby aspirin for thinner)
7. NITRO (spray for chest pains and spasms)
8. CELEXA 40mg (for depression)
9. LORTAB (for pain)
10. BACLOFEN 20mg 4 X's a day (MS medicine)
11. L-arginine 12,000mg (Taken since starting the Prinzmetal Study in Cincinnati several years ago since I was born without the genes needed to produce Nitric Oxide)
Non-prescription
I also take Fish Oil and Garlic and have to take Potassium if the medicine to keep fluid off depletes my system of it.
I also recently started taking a multi-vitamin containing B1, B2, B6, B12, Niacin, Folic Acid, Pantothenic Acid and DHA, another Omega 3 fatty acid

Needless to say, I have a seperate little suitcase for all my medicines when we go somewhere which includes a water bottle so I can mix my L-arginine. I never go anywhere without my Nitro, even walking to the mailbox although I use it more at night than I do during the day.

Hope everyone is having a great weekend,
Hugs,
Dee Marie

MoonFairy13

Hello there fellow Hoosier! Thank you for your list. In some ways I was glad to see someone else with the prescription Depakote on there. I had often wondered about me being on this medicine since I never really had a seizure, my doctor told me in my case it was more for some severe headaches I was having and at the time a severe problem with my nerves. I used to be on the 2 a day and am now on 1.
WONDERFUL to compare to someone else.

Thanks for all the info Tonya
Blessings and watch the cold air,
Dee Marie

tonyam

Hi Dee Marie,

Depakote works great for migraines. I had seizures from my migraines. I have many neurological problems caused from my Hemiplegic Migraines (HM), such as seizures, nerve problems, ataxia, speech, vision, etc. Depakote along with Verapamil help me in this area.

Were your nerve problems from headaches or from your fibromylagia?

Be well, Tonya

MoonFairy13

Hi Tonya,

To be honest when I said nerve problems I meant severe depression that had my nervous system a mess. I was living a stressful life with an alcoholic husband and at that time (Mother's day weekend) said he would rather see me dead than me leave him. I was seriously thinking about divorce after 25 years. I helped him get into a hospital for treatment and unfortunately we had kept his secret of a happy house and his alcoholism so well that the family turned against me saying I forced him against his will into a hospital. It tore my world apart to have the family turn against me and I was getting sicker and sicker at that time from the Prinzmetal.

If you look at Depakote on the Internet it will say it is also sometimes used for-- "It is also used to treat the manic phase of bipolar disorders (manic-depressive illness)" and I believe this is more of why I was put on it.

I still find it embarassing sometimes to admit my depression but speak of it openly now because it should NOT be embarassing, it should be able to be talked about openly. I have very little family left but what is left refuses to speak of it, the Pink Elephant that sits in my living room. So how have I handled that? I found new people in my life that DO support me and my conditions and yes, I have now what I call my adopted family. Even the people on this site are a part of that family structure, anyone who is a support.

I am so glad the medicine has helped your headaches Tonya.

Your Heart Sister,
Dee Marie

wendylee

Hi Dee Marie,

My symptoms were chest pain, pain down my arms, light headed, all symptoms that are typical of not enough blood flow to the heart. I too was told it was in my head. I was diagnosed with Prinzmetal when it was seen during a cath. Here is what I am on.
Norvasc (for spasms)
Wellbutrin (for depression)
Metoprolol
Plavix
Simvastatin
Asprin (324mg)
Prilosec
I think that's it...
The Norvasc has helped a lot but definately not 100%. I see the Cardiologist on Dec. 24th to discuss it. Hope this helps. -Wendy

amy5233

This is great for me since my spasms seem to be changing. I went to the ER on Thursday night bc I had taken 3 nitro quik two different times that evening with no relief at all. Since the pain was different and the nitro didn't help, I went. So now, I have answered on of my own questions about how I will ever know when I should go to the ER. They did not find any evidence of heart attack and I seem to be over the whole episode today. Friday night marked the end of about two weeks of increased chest pain and exhaustion. I have times like that about every three months. Wierd huh? I monitor my BP and it is never high, but it was as high as 148/103 in the hospital during this episode of spasms. The Dr. there started me on Cardizem 180 and told me that I should not be surprised if my legs swell. Great. So, now I am on:

Cardizem 180
12,000 MG L arginine (I am in the Cincy study as well)
3000 MG Fish oil (Actually prescribed by cardiologist)
2 baby aspirin

I see my new cardiologist on Dec. 31. I react to most medications that I have taken for my whole life. So, I am really hoping that she will let me stick with my original regime. I see prilosec on a list of meds above. Is this something that helps with the pain of spasms?

Hany

I just deleted my last post because it was far too lengthy again. To cut a long story short ,I first started getting pain when I was on cocaine 8 -9 years ago. (was on heroin and cocaine for 7 years) Since then the pain has got more frequent.

Now it is pretty much everyday, and activity level severely diminished. I have pain brought on by activity but also at rest. I also feel weak and tired and general discomfort in chest when not in pain.

I cant take L-Arginine because I got an allergic reaction. (coulnt breath, tight chest and throat) I take nitrospray. Calcium and magnesium and vit E. Also seretonin 5-HTP for depression.

I am slightly confused as symptoms for microvessel seem similar to prinzmetal. I shall be tested for microvessel soooooon. My Dr wont do ergovine testing. And I am scared of it also.

Hana

sarrae

Hi Ladies!
My spasms seem to be less severe but my symptoms typically are chest pain/pressure, pain in left inner arm/wrist, left neck and jaw, left molars, pain down middle of back, burning in chest and mid back, dull pain over left breast, SOB (more like I can't get enough air vs. panting like I ran). Also feels sometimes like heartburn. But if the heartburn moves into my left arm I know it's a spasm. My meds:
Norvasc 20mg
Nexium 40 mg
Birth control pill
Aspirin 81 mg
Potassium supplement (hypokalemia)
Nitro spray for spasm relief

Thanks!
Sarah

MoonFairy13

Hi Amy,
Boy, you sure do have some of the typical symptoms and I was like you, how do I know when I should head to the ER? I would almost feel bad when my tests would all come back normal and it didn't show where I had a heart attack. Wow, in writing that I see how terrible that sounds, I know I should be grateful at that moment but I also know I was feeling what felt like a heart attack.

My rule of thumb on it is if you take your doses of Nitro and the pain isn't relieved, you need to get to a hospital. We need to learn to be grateful the tests aren't showing we have suffered a heart attack but we also need to have the medical field understand that we have a rare disease, a very dangerous disease and take it seriously.

We also need those close to us to support us. I have found as I get older that I don't need people in my life who do not support what I am going through just like I support others. To be honest, and this hurts so bad to admit, my own sisters don't even have anything to do with me and I think a lot of that has to do with years of going undiagnosed, being told it was all in my head, being diagnosed as depressed and so on. But you know what, if they couldn't stick with me and believe in me, well, there is nothing I can do about it. I have a dear friend in Cincinnati I call my sister. She has been there and done more for me than my family. She recently came down when she found out I had pneumonia and stayed with me and helped me. She makes sure I get from Indiana to Ohio for the Prinzmetal Research Study. She either writes or calls every day. To me, THAT is a TRUE sister, a soul sister, a TRUE friend.

We need those in our life, they are a treasure to be respected and shown gratitude to.

Keep me up to date on how you're doing!

Dee Marie

MoonFairy13

Hi Hana,
I wanted to tell you how proud I am with your stuggle and winning the battle with drugs. I also what you to do a search in the Internet putting in Cocaine use and Prinzmetal. You will find that a lot of things will pop up as the use of cocaine is associated with this, even if you have stopped, apparently there are some lasting affects. So sorry to hear that you can't take the L-arginine, I didn't realize since it was an amino acid and something the body is supposed to make that someone would be allergic to it. What a shame hun. I know doctors laughed for years when I told them I was allergic to Vitamin E, I would end up in the hospital and couldn't breath if I took it and if it was in lotion or make-up I would get blisters on my skin. There was a study in Japan about this several years ago where those with Prinzmetal apparently have something wrong with Vitamin E production.

I am proud of you and wish you well!

Dee Marie

MoonFairy13

Hi Wendy,
You were VERY lucky that you just happened to have a spasm and they knew what it was when you were having your test. Apparently I too had a spasm during my test but they said I had a blockage. This happened the first 2 times I had the cardiac cath. I don't know why they couldn't come to their conclusion when they saw that the second blockage was in a different place?? So I ended up having a 3rd one with Ergovine and was then diagnosed.
I know your symptoms well hun and know that they are no fun. Wonderful idea about the doctor telling you to take the fish oil, mine did not tell me but I take it daily.
I wish you well with your appointment on the 31st. When are you scheduled to go back to Cincinnati? I go again on the 18th.

Stay in touch and thanks for the information.
Blessings, Dee Marie

MoonFairy13

Hi Sarah,
I am getting around to finally commenting on everyones post. : ) I was wondering, you mentioned that you were on birth control, I assume then that you have not started the change and that your hormones are in good shape? I am also wondering if you are getting to a point were perhaps you are clost to menopause age wise? I have found, myself included, that many women are noticing that the symptoms get worse as their hormones are waining. I have been doing some research on the connection and do wish the doctors would too or that it would be added in on the Research Study of Prinzmetal.

I also wondered if you have sent your bloodwork into the Prinzmetal Study in Cincinnati to see if you are missing the gene to produce Nitric Oxide and also if the L-arginine would help you. It may not be to bad now but I do like to warn women who are heading toward menopause of the posibility of increasing symptoms as their hormone level decreases.

I wish you well and hope you have a pain free day.

Blessings,
Dee Marie

BBender

Hello Everyone,
I was diagnosed with Prinzmetals in 2004 after having 2 cardiac caths, and they caught the spasms there. I was on Norvasc, but they changed me to Verapamil 480 mg/day, 10 mg/Lipitor a day. They say statins relax the smooth muscle. Also take Nitro. My hormones play a big role in this as most of the times when I am symptomatic, its that pre-menstrual time of the month. I am currently going through a hormone study now with the endocrinologist. Cold weather also affects me no matter what time of the month. I also take fish oil. The only meat I eat is chicken, and yet I just heard that chicken contains "dense nitrates" which increases spasm. Still have to investigate that one. Thanks everyone for all of your input. Makes my dealing with this much easier.
Hugs
Barbara

MoonFairy13

Hello Barbara and thank you for your post and information. I too am a big believer that hormones are a great influence with this disease and also believe they need to include that in their studies. I don't think you can have this many women around a certain age group or with problems with their hormone levels for whatever reason and not realize the connection to the spasms.

Have you sent bloodwork in to the Prinzmetal Study Barbara? I was wondering if the L-arginine would be of any help and if you have the mutated gene.

I wish you well and days of no spasms,
Blessings,
Dee Marie

saranyos

Wow, well I have a lengthly list of meds since I suffer from several other conditions as well. Knock on wood, they seem to be working and I was able to play tennis last night in 41 degree weather. My symptoms are just heartburn, then in tuns to sweating and nausea.
Amounts are daily
Imdur 30 mg
Cardizem 90 mg
Nitropatch 0.2mg.hr (this really helped me)
nitrospray (for spasms)
Omega 3 caps 1200 mg
xanax 3 mg/day taken in portiosn throughout the day for panic attacks
protonix for GERD
Tofranil 150 mg for depression
Topomax 200 mg for bipolar
B-12 shots for low homocysteine
clarinex for terrible allergies
Advair 500/50
nasanex
Acyclovir (an antiviral)
amantadine (an antiviral)
DHEA 25 mg

MoonFairy13

Hello,
Just a news flash, If anyone is taking the IMDUR~~Isosorbide PLEASE contact your doctor or pharmacy. There has been a recall on it if it is from the Ethex manufacturer!! It could contain more medicine in it than just the dose you need.

Thanks,
Dee Marie

VTJ

hello everyone,
I am taking the following for PA.
Micardis 40 mg
Nifedipine ER 30 mg
Aspirian 81 mg
Nitro Spray

This week my Cardio switch me to Nifedipine and took me off my Norvasc 10 mg since lately I have had more episodes of PA. I go back to see him in 2 weeks. However, I know the cold weather is not helping me and that aspect of it.
Hopefully. the new will work.... and control it.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You