Tag Archives: migraine

Advocating For My Wounded Warrior (Part 2)

We recently completed our annual eye exam. (You can read more about that here.)

We had to spend about $600 on TheHub’s glasses. His eyesight is increasingly bad. Every year he needs a new prescription. And glasses aren’t cheap. And since he’s become photosensitive, we decided to get him a pair of prescription sunglasses. So that tacked on to the price tag. Luckily, we used his old frames for that. I was hoping that would help him get out of the house more. But they aren’t as dark as we were hoping, nor are they as strong as he needs.

So, I’ve been trying to think of something he can do so he’s not stuck in the house all the time, something he can be passionate about again. And I posted the dilemma I have to one of my caregiver groups I’m in. I was blessed to have found it because the lady who runs it, her husband also suffers from migraines. She pointed me to the VA for their VIST program (Visual Impairment Support Team. Her husband goes through them and they have given him two pair of special glasses, one for inside and one for out.

During my research on this, I found that in our location it is called the VICTORS (Visual Impairment Center to Optimize Remaining Sight). I called them yesterday morning and they said they don’t normally see migraine patients, but they put in a referral for TheHubs to be evaluated by this program.

He now has an appointment for the end of September. I do hope this works for him, better than what we can get on the civilian market with our limited pocket-money. And allows him to get out of the house better, and more often.

Wish us luck.

LadyJai

Related Articles you may like:
VA Appeal Update #5
VA Appeal Update #4
VA Appeal Update #3
Our Story

 

Advocating For My Wounded Warrior (Part 1)

So, yesterday was a day of HOPE. Today, not so much. But I’m still advocating!

I’ve been following a the use of magnetic stimulation for migraines since 2008. eNeura, Inc. has the first FDA approved personal magnetic device for use with migraine patients. In 2013, the FDA approved its marketing. I attempted to contact the company then to see about getting my husband into a study or find out any more information. However, no one ever returned my email. Their site was basic and they only had a contact for press relations. I tried anyway.

We know from first hand experience that magnetism WORKS to relieve his migraines. When he was still in the Army, and the migraines weren’t as often, nor as bad, he would keep a neodymium magnet inside his cap and it would help. When they went to the berets, though, there was no place to keep it secured and hidden. So he went without. Every time he’s ever had an MRI he’s had a very bad migraine. This is not unusual, even, since he gets them at least 4 times a week. Every time he’s gone into the MRI machine, he falls asleep almost instantly, and then wakes up with NO MIGRAINE. So we know magnetic therapy works. But there’s no way we could get our own personal MRI machine. Plus, it would be incredibly expensive to run the thing. *shudders*

Yesterday, I went looking at it once again. This time, there was more information about the device and more contacts I could pose more questions to. I again sent a letter explaining my husband’s 15 year migraine history and asking about the device, how much it costs, and how we could get it.  This time, they responded quickly, but with rather disappointing words.

Dear Jamie –
Thank you for your inquiry regarding eNeura’s SpringTMS migraine treatment device. We are pleased to announce ours is the first clinically proven, non-invasive device cleared by the US Food and Drug Administration to relieve pain caused by migraine headaches that are preceded by an aura. The company has also received European CE mark for its SpringTMS device for the treatment of acute migraine and is currently marketing the device in the United Kingdom.
The initial U.S. availability of SpringTMS will be through a post market open-label study with leading headache specialists at a number of headache centers around the U.S. The headache centers participating in the post market open-label study are located in Arizona, California, New York, Ohio and Pennsylvania.
Please email Customer Care to request contact information for the site nearest you, or click on this link for a complete list of the sites currently recruiting for the study: https://clinicaltrials.gov/ct2/show/NCT02357381 . This link will also provide you with the list of inclusion and exclusion criteria for the study. If you husband does not meet the criteria, please still contact the study site nearest you. Some of the sites are also prescribing the device to private-pay patients who do not meet the study criteria but may benefit from sTMS (Cleveland Clinic, Mayo Clinic and Jefferson Headache Center).
The SpringTMS is rented for $750 for a three-month prescription, and we do not have a discount program in place at this time. If your husband is prescribed the device, the prescribing clinician will provide a treatment plan that is appropriate for him.
Best regards,
eNeura Inc.
Sr. Director of Customer Care

Seven hundred fifty dollars EVERY. THREE. MONTHS! Oh man oh man oh man. And this isn’t even something that insurance will probably pay for right away, I’m sure! Let alone the VA.

Speaking of the VA.

This got me thinking and doing a little more research. I found out that the VA has a research and development team within their organization. So I thought I’d contact them. With the eNeura device still in studies, I thought maybe the VA would consider this. I know there are more veterans out their who suffer migraines than just my husband. And I wonder how many of them are in the same situation where nothing has worked for them to relieve the pain and severity and the number of them. TheHubs has exhausted the VA Pain Center’s capability to help him. Last year was his last appointment with them and they pretty much told him that they can no longer help him.

I am hoping beyond hope they will consider getting into the study and offer it up to my husband. But this is the VA we are talking about. I don’t know what else to do, where else to go for help. Their “Contact Us” form is generic and done by a 3rd party (UGH) rather than contacting R&D directly. And now I wait.

Please pray.

LadyJai

Related Articles you may like:
VA Appeal Update #4
VA Appeal Update #3
Our Story

 

The Importance of Knowing Your Medication

A while back, I wrote a post on my other blog. This post has had the most hits and is the most searched for article I have done yet. Apparently there are a lot more people out there that want to know exactly what happens when you have Serotonin Syndrome.

It is extremely important to me that I share with you what happened to us because there are many ways you can suffer from the effects of Serotonin Syndrome, and it can be fatal if left untreated. Most people do not know what it is, the effects and signs of too much serotonin in your system. And it is generally caused by drug interactions.

I would like to re-post that article here because I feel that it is extremely important for our veterans and their caregivers to understand, recognize, and treat for this problem before it gets as bad as it did for us.

I Nearly Lost My Husband to Serotonin Syndrome, Twice

posted on WriteBackwards.We3Dements.Com on 12/13/12

http://www.nutramed.com/brain/neurotransmitters_serotonin.htm

Last week I nearly lost my husband.

Again.

I always dread when the doctors change his medicine. For some reason, despite the fact they document every medication you take each and every time you go into the office, they just don’t seem to take the time to go over those medications in order to check for interactions when prescribing new ones.

I should know better.

Back in 2006, my husband started taking a new medication in conjunction with his migraine medication and an over the counter sleep aid called Melatonin. On top of those medications, he was already on some heavy-duty stuff for his chronic pain as well. But the interaction came between his new medication, his migraine medicine, and the melatonin.

A relatively new syndrome had caught the FDA’s eye, but hadn’t trickled down to the medical community just yet, called Serotonin Syndrome. The Mayo Clinic defines Serotonin Syndrome as:

Serotonin syndrome occurs when you take medications that cause high levels of the chemical serotonin to accumulate in your body. Serotonin syndrome can occur when you increase the dose of such a drug or add a new drug to your regimen. Certain illicit drugs and dietary supplements are also associated with serotonin syndrome.

Serotonin is a chemical your body produces that’s needed for your nerve cells and brain to function. But too much serotonin causes symptoms that can range from mild — shivering and diarrhea — to severe — muscle rigidity, fever and seizures. Severe serotonin syndrome can be fatal if not treated.

Milder forms of serotonin syndrome may go away within a day of stopping the medications causing symptoms and, sometimes, taking drugs that block serotonin.

The first time this happened, we had no clue what was going on. My husband would fall asleep mid-sentence, he couldn’t stay awake most of the day. I blamed the new medication. I thought it was turning him into my image of what a strung out drug addict looked like. I hated it. It wasn’t until I came home one day from work and my son, then 5 years old, was wandering around our front yard and my husband was leaning up against a tree. I didn’t understand. I tried to talk to him. I tried to get him in the house. But there was no response. I literally had to drag him inside. But he tripped over the steps and fell into me, then onto the foyer floor. And that’s where he lay. I couldn’t wake him. I couldn’t lift him to get him to go to bed. I felt horrible for just leaving him there. And I felt like a <insert bad word here> for thinking he was “strung out.”

I called his prescribing doctor and got him an appointment the next day.

That’s when we found out about Serotonin Poisoning. It was something the FDA had recently caught wind of. Do you remember the problems surrounding a lot of the “lose weight” drugs, or Prozac, and such? All that revolved around this dangerous level of serotonin.  His doctor told us he was on the verge of dying. Had I not gotten him in when I did, I could very well have lost him. Though, really, I should have called an ambulance and had him in the ER. I beat myself up over that every day. But, we just didn’t know about this back then.

Now…I dread when the doctors say, “Let’s try this new medication.”

DREAD!

I am usually diligent about going through all his medications, listing them, keeping track of them, reading up about all their side-effects, and since that fateful day against the tree, going to a site that will list the possible interactions with each drug. Including over the counter medications, vitamins, and supplements. I am even leery about any “home remedy” or homeopathic anything because there is no way for me to check the interactions. I have a dear friend who tries so hard to help. She totally believes in essential oils, but I just can’t trust them. I hope she understands.

My husband has been taking his medication “cocktail” now for a few years. Last month, he went to see the doctor about the complications he’s been having with one of the stronger medications and had been considering coming off it, even if it made the pain worse. He wanted to see what would happen. But the doctor gave him a new prescription, new hope for relief.

I did my usual and memorized the side-effects and kept an eye on him to make sure everything went ok. I did not check the interactions. :(

Around Thanksgiving he was nauseous and feverish.  We thought it was the flu. He said it felt like the flu. But then it didn’t go away after a few weeks. In fact, it got worse. The pain. The nauseous. Feverish. Chills & sweats. Muscle twitching. Unable to think. Unable to eat. Unable to sleep.

After 4 days of him not being able to get out of bed and not sleeping at all, we discussed the possibilities. I couldn’t understand why it would take this long to “have a reaction” to the new medicine. And then it dawned on us, “what if it were building up toxins in his body?” And that’s when it hit me. I didn’t check the interactions with his existing medications.

But you trust that the doctors would do that before they prescribe you a new medicine, right? I mean, every time you go into the office they always ask you to list all your medicines. Heck, due to the new laws here in Florida, he has to bring in all his bottles and the staff have to count every stinking pill. So, you just take it for granted, I guess, that they would know. That they would check before prescribing.

But you know what happens when you assume.

And, I nearly lost him again.

Serotonin syndrome symptoms typically occur within several hours of taking a new drug or increasing the dose of a drug you’re already taking. Signs and symptoms include:

  • Agitation or restlessness
  • Confusion
  • Rapid heart rate and high blood pressure
  • Dilated pupils
  • Loss of muscle coordination or twitching muscles
  • Heavy sweating
  • Diarrhea
  • Headache
  • Shivering
  • Goose bumps

Severe serotonin syndrome can be life-threatening. Signs and symptoms include:

  • High fever
  • Seizures
  • Irregular heartbeat
  • Unconsciousness

When to see a doctor
If you suspect you might have serotonin syndrome after starting a new drug or increasing the dose of a drug you’re already taking, call your doctor right away or go to the emergency room. If you have severe or rapidly worsening symptoms, seek emergency treatment immediately.

Luckily, though, we caught it before it got as bad as last time. He stopped taking his new medicine. We had no idea how long it takes for your body to go back to normal serotonin levels. From what I can understand it’s all dependent on your body chemistry.  We just had to ride it out. He was one step away from the final stages again.

One more thing to add to this, he had stopped taking one of his antidepressants. All he remembered the doctor telling him was that this pill will help him wake up. So he stopped, cold turkey, because he wanted so desperately to go to sleep. When I told him it was an anti-depressant, he got really scared again. To stop an anti-depressant cold turkey is dangerous. You could die. So please, please, if you are on one, don’t ever do that. Once we got him back on that medicine, and got him to stop the new pain medication, things started getting so much better. Over the weekend, he’s been up and about, eating a little, feeling back to his old self, without the “OMG MY HEAD IS GOING TO EXPLODE” headache. Now it’s back to the normal pain he always feels. We even managed to do a few errands. I have my husband back!

The stress of the last few months has been overwhelming. I am doing my best to get through it.

Thank you for listening to me ramble. I’m sorry. It is my only way to vent and get this out. Plus, maybe it will help others know the signs of Serotonin Syndrome and help save a life.

Always, ALWAYS, check your medications. Do NOT take your doctor for granted. And never, EVER, stop taking your antidepressants cold turkey!

We are learning to recognize the symptoms sooner because once you suffer from this, you are more susceptible to having it happen again and quicker. I now suffer an anxiety attack when the doctors say, “Let’s try this new medicine” or “We need to change the dosage.”

We are always looking out for, and worrying about, strokes because he is a chronic migraineur. The amount of triptans he takes, plus the number of migraines he gets increases his chances exponentially. So, not only do we have to be diligent about that, we have to make sure we know his medication side-effects as well as interactions with any other medications he may be taking. It’s always best to periodically review them and, if you add anything over the counter, herbal, or homeopathic always go back to the interaction and add it there. You can never be too “safe.”

LadyJai