Reversible Cerebral Vascontriction Syndrome Awareness

For those of you who don’t know me as well, my little sister was just diagnosed with a rare condition called Reversible Cerebral Vasoconstriction Syndrome (RCVS).  So, I decided to write a post about it to raise awareness.

RCVS is a rare disease that occurs as the result of a sudden constriction or tightening, of the blood vessels that supply to the brain.  The main symptom of RCVS is sudden, severe, and disabling headaches, also known as “thunderclap” headaches.  Other symptoms include strokes or transient ischemic attacks (TIAs or mini-strokes), weakness, problems with eyesight, and seizures.  RCVS occurs predominantly in females before the age of 50.

The exact cause of RCVS remains unknown.  However, a study hypothesis suggests that the common problem remains in the control of the muscle tone inside the brain’s blood vessel walls that can cause RCVS.  There is no evidence of inflammation or changes within the structure of the blood vessels or the tissue.  RCVS can occur spontaneously or be provoked by a few factors.  The most common factor is postpartum, but other factors can be from exposure to illicit drugs and selective serotonin-reuptake inhibitors (SSRI) for depression or anxiety.  Here are some examples of some of the possible external factors related to RCVS:

Prescription medications associated with RCVS include the following:

  • Antidepressants: Selective serotonin reuptake inhibitors (SSRIs) such as Prozac®, Paxil®, and Zoloft®
  • Medications to treat migraines: triptans (Imitrex®, Maxalt®), isometheptene (Amidrine®, Midrin®), and ergotamines (Migergot®, Ergomar®, Cafergot®)
  • Immunosuppressants: cyclophosphamide (Cytoxan®) and tacrolimus (FK-506®)

Common over-the-counter drugs and supplements that can cause constriction of cerebral arteries include Nasal decongestants, (pseudoephedrine, ephedrine, phenylpropanolamine) Nicotine patches, Caffeine-containing energy drinks, and Ginseng.

Some illegal drugs have also been associated with RCVS.  Use of marijuana, cocaine, ecstasy, amphetamine derivatives and lysergic acid diethylamide (LSD).

Other factors related to RCVS have included blood and intravenous immunoglobin (IVIG) transfusions as well as vasoactive secreting tumors.  Examples of these tumors are phaeochromocytoma, bronchial carcinoid, and glomus tumors.

However, RCVS is very similar to another condition called Central nervous system (CNS) vasculitis. CNS Vasculitis is a condition that results in inflammation of blood vessel walls of the brain or spine, which make up the central nervous system. CNS vasculitis often occurs in the following situations:

  • It appears along with other autoimmune diseases such as systemic lupus erythematosus, dermatomyositis, and rheumatoid arthritis (in rare cases).
  • It may come along with a viral or bacterial infection.
  • It may come along with systemic (affecting the whole body) vasculitic disorders (Wegener’s granulomatosis, microscopic polyangiitis, Behçet’s syndrome).
  • It may appear on its own; in such cases, it is referred to as primary angiitis of the CNS (PACNS).

Health care providers need to be aware of RCVS.  It is also very important to tell the difference between RCVS and CNS vasculitis as soon as possible. The treatment and outlook between the two conditions are very different. Treatment of RCVS does not require immunosuppressive drugs, but CNS vasculitis does.

We have set up a fundraiser to help Courtney, my sister, with medical cost while she goes through this horrible event.  She is a new mother of 7-month-old Ari and could use your help.  If you can donate or share, we would greatly appreciate it.  Please click HERE to view the fundraiser page and get updates on how she is doing.

courtney fund


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