So many specialists…

When you have a chronic illness it usually means you have more doctors than your typical patient. I have more than one illness so I have more than 20 doctors and physical therapists in my Rolodex.

Tomorrow I see a spine specialist for the first time. I have had spine pain since I was 16, it has gotten progressively worse over time and as such I just got use to the slow increase of pain.

The reason I’m just now seeing a specialist after more than 20 years is because the pain was completely gone for 15 months after I had stem cell treatment. Once that 25 months was over the pain came back full force, no gradual increase just BAM!

That was the first time in my life I understood the need for heavy pain medication and how someone could come to depend on them.

I had assumed the pain was related to my MS and a lesion near that location on my spinal cord but my neurologist informed me that was not the case. On his referral I get to add yet another doctor to my file.

The takeaway from this that NOT everything is related to the major health issue and if you discuss it you may never know. Also, spreadsheets, because I can tell you for sure one small spreadsheet with doctor’s info is a lot lighter than 25+ business cards.

Daith Piercing for Migraines

I have a multitude of health issues, one of them is at least 4 different types of migraines and headaches. I get migraines, the typical type, abdominal (those ones are weird), tension headaches, weather induced migraines from pressure changes typically from storms, cluster headaches and so on.

After much thought and investigating I decided to get my daith pierced, it’s a piece of cartilage in your ear. It is suggested to get it on the opposite side of where your migraines typically occur. For me, my pain is always on the left side of my head, so I got my right ear pierced in the daith area. Some research suggested that it only helps with food related migraines as it is a pressure point for the same, so I was not going to get it originally. Then I realized, I may have food triggered migraines and just not know it because I get about five a week. The only way to be sure is an elimination diet, and let me tell you right now, that will NEVER happen. With my luck multiple foods I love would show to be causing my migraines and then I would have to cry in a corner for weeks.

I went to get the piercing at a tattoo place that I had been to for three of my tattoos and they do piercings with medical grade steel pieces, which means clean and less likely to cause a reaction (I am allergic to medical staples so who knows). The first hole did not hurt at all, the second hole, in the thicker part of the cartilage hurt like hell, but only for a moment and then there was a pleasant feeling that was like pressure was released from my head.

I got the piercing on February 26th, it has been one week now and I have had NO headaches of any kind since (knock on wood). We even got a storm this weekend and I did not get the typical pressure related migraine several days before the storm hit. It is swollen, and when I accidentally sleep on that side it hurts in the morning. It can take up to a year to heal, for “normal” people it is 3-6 months but I am immune compromised and my body takes so much longer to heal then when I was younger.

I will continue to clean my piercing twice a day with a wound cleaning solution from the first aid section of any store. I will ice it with a clean cloth when the swelling really bothers me. I will hope that the piercing continues to help me with headaches and migraines.

Is there scientific proof? No, but I have suffered migraines and headaches since I was at least 7 years old. I am tired of all the medications and pain. If it helps, awesome! If it does not continue to help, I can either have a nifty piercing or have it removed and let it heal.

If you have a health issues like me though, Multiple Sclerosis, and you are required to get yearly MRIs, just know, you will need to time it so you have enough time to heal. You will also need to go back and have them remove it temporarily before you can get your MRI and then after you’ve done it to put it back in. It is metal after all and I can’t imagine that would feel great busting out of the side of your head.

Sensory Overload

Back in my teens and early twenties noise did not bother me. I used to listen to loud music, have the TV on in the background while I studied or wrote it was fine. Now, it makes me crazy and not in the sense that it is just annoying because I am old.

I am in my thirties, I am not sure if it’s related to my MS, Meniere’s or both as people afflicted with either complain of sensory issues. When I am trying to focus on one thing and there is noise or talking or a loud TV, music anything, I get actual nerve pain. This week I was helping my youngest son with his reading homework, he was reading aloud to me as I listened; my oldest son was talking to my husband who then came out and started asking questions. I lost my shit a little, I didn’t realize I was yelling in response until my husband said something, all I knew was that I was trying to focus my attention on one thing and then I was overwhelmed with sound.

For people who don’t have this issue think nails grating on a chalkboard (though that sound doesn’t bother me, probably from nerve damage in my ears), in addition to the feeling of that sound think of something that gives you uncontrollable shivers down your spine and go ahead and throw in some heart racing chest pain inducing feeling. I can’t speak for all people with sensory issues, but that is what it feels like to me. It’s terrible, when it’s happening I just want it to stop, but you cannot control the sound of everything around you if there are other people involved.

My therapist is always telling me to take deep breaths, mostly when stress hits me or my PTSD kicks up. It is a hard thing to remember to do, especially when panic sets in because your body has decided to revolt its surroundings. This thing happens to me way more than I would like, well actually I would like it to never happen so I guess that I would like to be able to control when. If I go out to dinner with my husband, the sound can become too much, out with the kids, or play dates, social events. The problem is that it is not consistent, it’s not every single time there is sound or only when I am doing a certain thing.

If you know someone with sensory issues, take a beat, they may be snappy because their body just attacked them and they can’t handle anything else at the moment. Ask before touching, because I have even had to explain to my kids that “light” touches are actually painful to me as it sets my nerves on fire.